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.
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.
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.
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.
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.
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
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.
"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?
If your husband is working he may not fully realize what you do during the day. On weekends go out a bit. Let him take care of his dad 24/7 for 2 days. I know that will be difficult for you but even if your husband is home and he SEES what you do, doing is a lot more real than seeing.
Have you talked to FIL's doctor about medication for the anxiety? A change of medication or an increase might be necessary if the skin picking has increased.
There are mittens that you can put on him that would prevent much of the damage.
He is on Zoloft for the picking, but I don’t think it has helped. I think some have mentioned Ativan before, I am going to ask about that one today. We do have mitts, I haven’t tried them yet - I imagine it will escalate things if I have take them on and off every time he has to go to the bathroom. Maybe we should try that this weekend while DH is home 🙂.
I plan to do a lot of outside projects this weekend and let DH take care of his dad. I don’t think he will have too much trouble, my FIL is compliant with my husband
I actually welcome the practical suggestions. How is making assumptions or judging me or my husband practical or helpful?
I never said the situation is dire, just that it is stressful and I asked for what I can do before placement to manage him safely. My FiL is not physically attacking me or sneaking out of the house, running around the neighborhood unsupervised, he is being argumentative and stubborn.
I do believe placement needs to be soon, I am not in denial.
You also keep assuming my DH will never place him in MC. You don’t know anything about my husband. He is not selfish, but he is not quick to make decisions. He would have put my FIL in MC last year if it wasn’t for Covid.
By the way, I did have to deal with very difficult behaviors with ALS, my mom became very agitated during her decline. My MIL had cancer mets to the brain to the point that we had haldol on hand. Her behavior was ten times worse than what I am dealing with my FIL now and when it became too much, we got help. Again, you make a lot of assumptions about me.
Yes I'm making assumptions. Because your scenario is VERY common on here, and 99% of the time it's due to one family member not willing to place their parent and the rest of the family suffering for it.
You asked for help on dealing with your FIL until he's placed. What I and others are trying to convey is that FIL is not going anywhere. At least not in the time frame you mentioned.
I'm sure DH sees how bad his father has gotten, but him not doing anything about it is the denial. He sees it but does not want to accept it.
If you have all this experience of caregiving, then you already know how to handle it, right? So why ask what to do?
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.
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.
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?
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.
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.
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.
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.
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.
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.
To get the brother on board: there is no need to wait 2 months so that FIL can go live with them for them to experience it directly to see how bad it is. Your husband and your son know that FIL is being inappropriate with you. You can get a voice-activated, motion activated Nanny cam, that looks like a clock or a stuffed animal, etc etc (under $100), and that hooks up to your computer to download and forward. When your FIL acts out at times you are alone with him and try to get him to do something for his own good, it will record and you can show it "in person" to your BIL. With FILs behavior as you say it is, that should take a matter of a couple of days to document by video. For all you know, it might also come as a surprise to your DH that it's as bad as it is. YOU, with heart issues of your own, are being abused as well, and DH is standing by.
To letting FIL roam when he is rated a 5/30: if HE were to become injured, that could leave you and your husband exposed for senior abuse or negligent endangerment. No matter what anyone on the outside, including BIL or his neurologist know or have been told about, you are still the ones directly responsible. There have been cases where authorities come after the ones who are supposed to be in charge. Many of those authorities don't understand dementia and how difficult it is to gain coooeration.
To getting in help from the outside: a good and functional idea, but make sure that DH, son and yourself ALL portray to FIL that this outside person is a friend of YOURS, who is there to help YOU. Don't ever indicate to FIL that you think HE needs help. That will just promote resistance. A good caregiver, as you must know, certainly knows how to play that game.
After decades of hands on family caregiving, I suppose I could also address other aspects,, but I hope these four points are, at least, helpful. My best practical advice is that YOU have to insist on moving up the timeline. Good Fortune toyoul !!!
So, this is your husband's dad and your husband is tasking you with the impossible--allow him to walk, but keep him out of danger. And your husband's first duty is to you, his wife. Not to his father, or to his brother's opinion.
I would be making myself scarce for a week or two to force the issue.
Others have spoken their minds about their opinion of yoir husband. I'm sure he is just a conflicted adult son trying to do the right thing, but his eyes need to be opened that he could lose you to a heart attack. And then he would be up the creek.
Would your DH be convinced if his father's doctor said his father must be placed NOW for his own safety?
It is definitely time.
Also call the Alzheimer's Assoc. They will be able to tell you how to get some respite.
My mom has been in MC since Jan1. She lived with me for 2 years. Alzheimer behaviors are so hard to cope with. Plus seeing your LO so lost and confused is difficult emotionally.
I have a camera in her room and I say goodnight to her every night. She says Good Night back.
Keep us posted.
Depending on the type of dementia this does happen. My mother's was likely vascular and 9 months after moving her to MC, she stepped back about 40 years in time. The move itself didn't really impact her, other than being angry about it and begging my YB to bring her back to her condo (thankfully she never asked me!) Her step back only affected her memory of more recent times, it didn't cause issues like you are dealing with. I could tell because of certain discussions - asking about her mother, her previous residence, etc.
As we often say, every person's journey with dementia is unique. Yes, they can share symptoms and behaviors, but not everyone has the same ones and timelines can vary a lot. The "staging" many sites provide are averages. They can only help us anticipate what we might deal with and when, but it will vary.
However, attempting to take him to BIL's place, not even a safe place to begin with in your words, could trigger even more regression. IF BIL needs convincing, video as much as you can. If you can install some cameras, that would be even better. Those who do not provide the care, or even see the person on a regular basis for more than 5, 10, 30 minutes are clueless.
The move to BIL's is going to be a disaster and you know it. DH needs more information about dementia provided to him. When my mother was showing signs of memory issues and some confusion, I had to learn quick! I knew NOTHING about dementia. To have both DH and BIL experience it on a daily basis, vs just seeing him in the evening or occasionally, when he is "compliant", or just reading about it would be best! There is plenty of information online, but he and his brother really need to DEAL with this all day, every day for at least a few days. If BIL needs more convincing, he needs to come stay in your home for a few days and be responsible for FILs care - that means total hands off for you, even if that means you going to stay in the camper. Leave instructions for him and let him deal with it for a few days. Between the two of them, at least one might see the light. Epiphany may happen! Sometimes there is nothing like OJT.
Medication changes to help with his picking might help. Hopefully they can find one that relieves anxiety for him, which may help with the picking as well. It's best not to "confront" him with anything you want him to do/not do. Offer choices and let him decide (so long as it is safe.)
Hoping you post to let us know what the next step is. Good luck.
For my in-laws (93 and 96 years of age), I have produced (using Animoto/filmora software) a few musical photo slideshow/video montages of my in-laws with family members and close friends. It's amazing to see the joy on their faces and hear them rejoice as they watch and relive certain memories of themselves with their loved ones on screen! I used pics from their youth onward. The pictures change from one to the other at a reasonable speed and I picked music that is upbeat and from the days of their youth. We show these daily for a small part of memory care Monday thru Friday. (Why wait to show these memories after they have passed, when they can enjoy their joinery in the moment, presently.) 🤠
When my mother-in-law was in the hospital (had hip replacement surgery) and rehab, nearly all the nurses and doctors, and therapists allowed me to photograph them interacting with, caring for, and their visits with her. I made 8x10 hard copy pictures of these occasions and put them on her hospital and rehab room wall, along with family pictures. We had other staff members who enjoyed seeing pictures of themselves meeting my mother-in-law. All rejoiced seeing his/her photo on the large wall with all the others. At that time to now, my MIL rarely remembered why she was in the hospital. She used to ask, when laying in her hospital bed, who changed the living room curtains (as every 20 mins was a new day for her). The photos helped my mother-in-law to feel at ease and to be able to recognize different persons coming to see her as they would point to the pictures of her with them on the wall. She felt like a celebrity and had a positive disposition throughout her lengthy stay. Pictures and music can make a huge difference in the life of one who has very little autonomy or independence. Familiar pictures, short videos, and music combined has been a powerful memory aid and euphoria that touches the heart and stirs recollection.
She and my FIL have been living with their son and me, for 4 years now. I play 3 picture slideshow videos set to music in a row during downtime. They look forward to seeing them once a day. They not only hold their attention- here at home, but the video combos gives me an hour to regroup, organize my day, or just relax and chill. Perhaps, something like this will help you to see beyond your FIL's peculiar behaviors and to see and enjoy a few moments of his peaceful and happy moments in a new way too, during the remainder of time you help to care for him.
The month of May is right around the corner and as you say, your BIL will get to see his father's behaviors. It's good to have the whole family on board to help support your FIL with his overall care and well being. Perhaps, sharing all the positive, happy, and congenial moments captured in still photos and videos and enjoy showing them together to your FIL will help curb his aggressive tendency to lash out and calm his inner spirit.
It's tough to be on the receiving end of aggressive or hostile impulsive behavior, especially when all you aim to do is provide love, assistance, and support. It can throw you off your game or can put a damper on your day-if/when we take it personal. The reality is that these problems, along with wandering, sleeplessness, taking longer to complete a simple daily task...are symptoms of the problem of the brain. Keeping up to date about stages of dementia and Alzheimer's helps. It's vital that you have support you need. Praying helps, too.
Take care of yourself.
I’m deleting my account after this post, but wanted to update and thank those who responded with compassion and useful ideas.
I was coming home from work one night and while driving down a dark, empty of houses, road, I saw an old gentleman walking and looking around. I stopped to help him. He was lost, couldn't remember where he lived. I took him to the police station. He had no ID because he remembered throwing his coat with his wallet into the back of a pickup. That is what he thought, don't know it it was true or not. Come to find out, he lived over 30 miles away. Someone gave him a ride to our town and dropped him off where he said he wanted to go.
This doesn't apply to you, but just for an example, one of our deputy's father, drove to the store, he didn't return home. His wife called him on his cell phone, he said he stopped for gas and would be home soon. He never showed up, more phone calls, he would say he would be home in a little bit, or he was almost there. Finally someone talked him into reading a sign, he had driven from Southern California to Grants Pass Oregon a distance of approximately 750 miles. He had no idea where he was.
Please don't discount your FILs strength. Both my daughter, who was a fire captain, and I have had to deal with little old people whose strength was unimaginable.
I wish you and your family the best. Good Luck and stay safe.