Leaving ES at home alone
This is my first post. My DH was diagnosed with younger-onset in early December and we are still processing what this means to our lives and I am looking for direction on how to be supportive but not lose my mind. He is devastated and struggling to accept the diagnosis. He is still independent and drives short distances. The disease has not significantly affected his verbal capabilities or memory but has impacted his ability to learn, understand new things, and his anxiety is through the roof. But he refuses to try medication because he is convinced it will slow him and affect his work.
Does anyone have advice for how to manage when I have to leave, sometimes just for my own sanity? Just writing this, I have thought through some of the things I know I need to do, but I would like to hear from others who have already learned these hard lessons. Thanks for the support.
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I think you already know the answer to this question.
Safety is the key. Imagine him on his worst day. If a problem occurred at home, a fire, water left running and flooding bathroom or kitchen, him falling (it happens in early stage too), would he be able to get immediate help or would he panic? Calling you doesn't count. Would he call 911 or be able to call someone to get the water shut off? Can he get out of the house and get any pets out as well?
If he gets lost while out, what happens? If he has a panic attack, what happens?
As far as driving, even short distances for someone who is in early stage can be problematic.
Is he still working?0 -
I agree that safety is the number one issue. Is it possible to take him with you? The time will come when he will have no choice but to have others in his life.
Welcome to the forum. You are in a good place to get understanding and help.
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I'm so sorry for all the heartache you and your DH are going through. It's been almost five years since my husband and I were in the stage you are in now, but the feeling that a bomb just went off under our lives is still here. But now I know that it was a survivable event. We all get through it somehow, and please know that you will too!
Like you, I have a mother who also has dementia. In one way, it helps to already know about the illness, but in another way, it feels incredibly unfair and beyond belief to have another loved one stricken. But, again, you'll get through this!
As for your question regarding leaving your husband on his own. Everyone is so unique in what skills they retain and for how long. You have to assess your husband's abilities and then err on the side of what if the worst-case scenario happens. Your husband's reluctance to tell people what's going on with him makes things trickier (mine was also reluctant). I guess I wouldn't leave him on his own overnight unless there was at least one person aware of the situation and sort of informally "on call" if a situation arises. The stress of worrying about him during the whole trip is another factor.
Can your husband travel with you? Maybe putting off your visit until the two of you can go together would be better?
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Welcome NK. I was somewhat like your husband when I first joined. I had trouble with speech and memory and much anxiety. Beginning Exelon patch helped both my speech and my short term memory. I must tell you that, after several years, my neurologist determined that I do not have Alzheimer's Disease. Nevertheless I continue on Exelon patch and memantine extended release. I am saying this to suggest that he consider a trial of Exelon patch or Aricept to see their effect on him. These are not meant to be cures but might help his functioning and prolong the early stages.
There used to be several patients posting but no longer.
You need to drive with him to see how he does. PWDs (persons with dementia) develop visual problems along with slow reaction time and other deficits that can impair driving. Don't wait for an accident.
The majority of PWDs are unaware of having dementia (anosognosia) and thus are unable to make long term plans. For others, I think it is important to develop a philosophy. In the beginning years, I decided that if I did have dementia, I was going fight for my life and do whatever I needed to do. This is where this board comes in. This is the only place to learn what to do for living with dementia. Safety is a priority, but also living the rest of your life in a manner that is fulfilling for you. This depends on each person. Spending quality time with family or other loved ones may be important. Doing bucket list activities may be important.
We patients focus on lifestyle habits which we call Best Practices. These include:
--taking medications as prescribed
--eating a brain-healthy diet (Mediterranean) with antioxidants and omega 3 fats
--exercising
--continuing to stimulate the brain (learn new things)
--continuing to socialize (in small groups).
Also get good sleep and use complementary or alternative practices as desired if interested. Avoid stress! Stress and anxiety decrease our cognition by HALF!
If your husband wants to post, I will be happy to respond to him on the "I Have Dementia" board or the "Younger Onset" board.
Addendum: is he still working? He should discretely check his most recent performance review for complaints or warnings. Consider taking short term, then long term disability or even retirement if he has enough time in. Discuss with the appropriate people.
Iris L.
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It is so hard to make a call like this.
Every person with dementia presents a bit differently, so it is hard to make a blanket statement that what you propose to do is perfectly safe at this point or will absolutely goes sideways and leave you dealing APS on your return because you misjudged your DH"s ability to be safe without you around.
My mom did leave dad home alone for almost a week to attend her sister's funeral 500 miles away before he was even diagnosed. I was so concerned about this, I volunteered to skip my beloved auntie's funeral to stay with dad, but she insisted I drive her. They had a couple across the street who were longtime friends of the family who agreed to bring dad dinner and check on him. FTR, I had been urging her to have dad evaluated for about 8 years at this point, but she didn't see it.
He was OK for a couple of days, but soon became very disoriented and our friends started checking on him 2-3 times a day. Part of the reason my dad did as well as he seemed to my mom was because she was his "safe person"- the routines and security her presence afforded him allowed him to function at his best. With her a 10+-hour drive away, he spiraled out of control- especially in the evenings and overnights. He would talk gibberish and paranoia and saw evil doers reflected in the large, uncovered windows that overlooked the golf course. The friend filled mom in and suggested she return asap. We drove home the next morning but hit traffic, so mom decided to stay over at my house before driving the final 4 hours to hers.
She was home before he woke. The house had been trashed. There was broken glass everywhere. Bloody footprints out to the garage and back into the front door. Art- specifically glass framed prints and painted portraits- had all been removed from the walls of the living room. Some of these were over his head so I am assuming he stood on the back of the sofa to reach them. When she checked on him, he was badly bruised and his feet were cut up. He kept talking about having killed the bad guy whose body would be found in the garage. The friends had stayed with him until about 11pm the night before but left when he started to threaten them.
I wonder if it makes sense for him to tag along on this trip- being a plane ride away in a time when flights are routinely canceled for weather and staffing shortages would terrify me.
HB0 -
The user and all related content has been deleted.0
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One man's opinion, FWIW. You have become your husband's caretaker.
His needs outrank your mother. She will have to get used to that
She can have some of what is left when you have taken care of him.
Just like young children's needs outrank spouses and parents.
I have 5 young grandchildren. Their needs come first
Then my grown children and spouses , then my wife and then me.
Funny storyMy mother said to me "When are you going to get a Haircut "
I said "When my WIFE tells me to".
Touche' She said "well played"0 -
Welcome to the forum, and sorry you need to be here. It’s been some years since I could leave my DW alone for five minutes, never mind two nights. I tell you this not to discourage you but so that you are preparing yourself for what is coming down the pike.Your DH may well resist help in the perceived form of a ‘babysitter.’ But he has lost judgment and you will need to do the thinking and deciding for both of you.
I have to agree with other comments here that suggest he may already be at a point where he can’t be left alone for 48 hours. You write that you think he’ll be all right if he doesn’t panic. But it’s like that commercial that says ‘think’ isn’t good enough. More than that, your DH’s elevated anxiety level suggests he could well panic. Then all bets are off!0 -
Two points, from someone who has been a dementia caregiver for several years:
1) Our LO's are almost always worse than we think they are, the changes come on slowly and we don't always have the capacity to be objective.
2) Our LO's are almost always worse when we are not around ---- more anxious, more impulsive, more agitated. Dementia is about so much more than memory loss, it affects safety awareness, executive function, problem solving and so much more. You can't rely on him to make the right decisions when your scaffolding is taken away.
Please don't leave him alone for 48 hours. It is a recipe for disaster. Take him with you if you absolutely must see your mother. I agree with the other posters, his needs and wellbeing have to come first.
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Wow. What an outpouring of support and good advice. Thank you all. Yes, I think I knew the answer, but these posts have helped me think things through. You are right that I need to think of worst case scenario and decide, and until I have more support in place I can't go. My brother offered to come in March and stay so I can go see Mom and I'll have to take him up on that. But I am struggling with accepting my new fate as much as he is struggling to accept his. My husband won't fly so until we can find a time and good weather to drive together and I can convince him to go and leave our cats with a caretaker I probably can't travel. Down the road I will need to find options for someone to stand in for me, because I know I will lose my mind without a break.
You asked about him working, and I should have clarified he is a writer and is self-employed. He continues to write and has good days and bad days but it is his lifeline. I am the one employed but working from home. I'm taking some time off to get things in order and think through whether I can keep working. I'm going to use FMLA to decide if I need to retire early. I am so lucky that my job allows me some flexibility, but I'm not sure how far that will reach. Pre-Covid I traveled for work, and I know that is no longer an option in the future.
There are so many things to sort out. My husband is all too aware of his condition and he is the one who thought he had a problem pre-diagnosis. I was convinced it was his anxiety and tendency towards depression and an evaluation would force him to deal with this and we would "get better." The one thing I knew and said was that there was something wrong and we needed to address it. The neuropsych tests, MRI, and PetScan clearly showed Alzheimer's. So now I know and he is struggling to accept. The doctor said the anxiety and depression are symptoms and recommended Aricept and an anti-anxiety med, but he refuses to take any meds, except for his asthma, because he thinks it will hurt his writing. I think it will help, but I can't convince him. But we are struggling to find doctors he can trust and will listen to.
We are also struggling with when to let people know. I'm feeling the need to expand the circle because this is now our life, and not being able to recognize that keeps a barrier up. My one brother knows, but the other two do not, and I need them to so they understand why I am not helping with mom. I want him to keep his independence ask long as he can, at the same time I am struggling because I am losing mine. Driving is something I constantly question. I do ride with him regularly and he does fine. But we have talked about it. He is the one who worries more and says he will speak up and quit if he has any doubts, but I'm not sure I can trust that. For all of these things like staying home alone, driving, or even using his credit card, it is such a hard decision on what the line is. And I am trying to steel myself for taking away his freedom, piece by piece.
If you talk with him, you would never know. He is the one who remembers authors, actors, movies, books, and stories and he is a great talker. But he can forget how to engage and listen, so I think friends are avoiding him. That hurts as he wants nothing more than that interaction.
Iris, you suggested he post on the Community and he opened to the door to being open to that a few weeks ago. I'm going to bring that up to him and it might help. I also worry about the frank discussions I see and if that will stress him out more.
So much to process. Thank you for helping me do that. I can see that I will be a regular on these posts.
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You tell EVERYONE who you need to help pick up the slack
You cannot be caught "between the grindstones"
you cannot put any extra stress on yourself. Being a caretaker is hard enough all by itself.
Strictly for humorWe were in Kenya with our daughters 8 & 9
My daughter , a lovely little blue eyed white kid said "Daddy don't tell anyone we are tourists"
I said I don't have to tell them , they just look at us0 -
I have to agree that you need to let people know (and probably you will need to do it without him knowing) what's happening because you WILL need help sooner than later or you will become a prisoner in your own home.
If he chooses to participate in the forums for people w/dementia here, great! I would put it out there that if he ventures into the caregiver forums it may be more than he wants to know at this time - and then let him decide.
The driving will probably be a situation where you won't know until something happens. Hopefully he won't kill or severely injure someone when the "thing" happens. Look at the car - are you seeing scuffs or dents that are unexplained? Take time and really examine it. Any scuffs on the tires (from cutting too close on corners/curbs). Dents on the passenger side?
I learned the hard way with my mother that these dings and dents show there's a problem and I chose to ignore it - and then I got a call that she had smacked into the back of a police vehicle that had someone pulled over on the side of the road (it was raining and nighttime) and the officer took her disorientation as impairment. That turned into a legal issue.
Also, when he leaves, is he gone an appropriate amount of time or are his trips taking longer and longer. Another thing I ignored was trips taking a very long time and she would have a plausible explanation like stopping somewhere else, taking a drive, etc. What I learned later was she was getting lost.
My first time around the caregiving carousel I ignored many things. This time around I'm not. I can't.0 -
As for driving… When my husband had the neuropsych eval, the report stated that based on the tests, he shouldn’t be driving. It went on to say that if he wanted to, he could get a formal driving evaluation from a private company that would assess his abilities driving and, if appropriate, help him to make modifications to improve his driving. Of course, my DH said he wasn’t going to stop driving and he wasn’t going to a driving school. However, after that, he only did a few very short trips, to “maintain his driving skills”. It’s probably been a year now since he was behind the wheel.0
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NK123 wrote:
If you talk with him, you would never know. He is the one who remembers authors, actors, movies, books, and stories and he is a great talker. But he can forget how to engage and listen, so I think friends are avoiding him. That hurts as he wants nothing more than that interaction.
I am sorry you are living through all this. I watched my mom process dad's dementia and the toll it took on her independence and health; in many respects it was harder than watching dad go through the disease process. He eventually developed anosognosia and became unaware of his cognitive shift which brought other logistical issues but spared him a lot of pain.
If his friends are withdrawing, they likely have a sense something is afoot.
I suspect your DH has quite a bit of cognitive reserve which can mask decline to a certain degree, but executive function, empathy and short-term memory are typically lost fairly early on and can impact social skills. My parents lost a lot of friends fairly early on in dad's disease process. When the folks in their beach community all pulled back and invitations stopped, they started spending more time at their place in Florida where neighbors were more welcoming until dad's unfiltered behavior meant they were dropped as a couple. I also noticed my dad's political leanings took a loud and hard right which may have been off-putting to some of his former friends.
My dad's long-term memory could be confused by the later stages, but well into the middle stages he could recall all manner of details from whatever period to which he'd mentally time-traveled. If and what he'd had for lunch escaped him, but he could recall his childhood phone numbers.If he's still driving, you may want to reach out to your insurance carrier to make sure the policy will cover him in the event of an accident. My parents' policy would not cover a driver with a record of dementia/driving AMA. If he'd had an accident, the company would not pay out or represent him- they could have lost everything. My mom was recently sued for an accident she caused in April 2019. She does not have dementia, FTR. She got notice of the lawsuit in the fall of 2019 and was deposed in February with a June trial date set. That was put off several times until September 2021. Had this been my dad, the decline in the 2 1/2 years between accident and court would have allowed for a very different person defending himself.
HB
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His is such a hard stage you are in….My DH is now mid-stage Alzheimer’s, and this just makes me remember a couple things that may be interesting to you.
He could drive/operate the car just fine. The bigger crisis came because he could not remember where he was going, who he was supposed to see, or why he was in the car. He got lost going to his doctor of 40 years, two miles away…. It was the first big thing that could not be sloughed off as “a little forgetful” or “not feeling good.”
Less than a week later, he had to drive me home after a very nearby medical procedure. I knew it was risky, but we/I wouldn’t get lost. But I fell asleep immediately in the car. He woke me almost an hour later, we were miles from where we should have been (we should have been home in 10 minutes), in heavy traffic. He “drove” just fine. But he had no idea where we were, or how to get home.
With friends/acquaintances….yes they started to withdraw, he could not participate in a normal conversation, and we could no longer share many activities. His behavior was odd, and there were rumors about the cause (drugs, alcohol etc). . Once people,knew Alzheimer’s, they were unfailingly supportive and understanding.
He also had a somewhat high profile in the community, and there were a lot of expectations and requests to do things he could not do, knowing his condition helped with the expectations.
Do you ever get to see your DH writing before he turns it over, if it gets turned over. If he does writing that transfers information (a novel would be different) and he gets it wrong, it could be at best embarrassing.
My DH thought earlier (before we got Dx and told people) he was doing fine at work—he was not, but they covered and worked around him. Being shut out was painful for him; they just knew he wasn’t performing. Since he was the boss, nobody wanted to make an issue, they just avoided as much as possible. If he *had* made a mistake in papers he otherwise would have produced, I later learned, it could have meant huge legal problems.
Home alone: he did so little I didn’t expect him to get in trouble. The problem was, he did not recognize trouble when it hit—like a broken pipe flooding the kitchen. An inch of water on the floor, I’m screaming what’s this, and he looks and shrugs. Another time I left the kitchen longer than expected and we had a stove fire. He just stood and looked at it, walked away as I put it out. Refrigerator and freezer left hanging open not even worth mentioning.
They say Alzheimer’s is especially cruel in that it take two lives—the person who has it, and that of the caregiver. I was very happy with our life before Alzheimer’s took it.
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Finding your way isn't the hard part of driving. The hard part is being able to quickly process occurrences that should not happen.
I was driving just after sunset the other evening and encountered a small child in the road on a bike without lights. I had to know what to do right now.
DW quit driving when she could still operate a car and find her way. She could have passed a driving test. But she had worked in insurance and knew she would be found at fault for any accident, regardless of the circumstances, due to her diagnosis. A PWD who drives risks everything they have.
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Very tough position to be in. Safety of course should come before sparing his feelings. I agree with telling as many people as you need to. It will help you have a support system. Leaving him alone will most likely happen especially if he is unwilling to have a caregiver in the house as you mentioned. I would make sure to leave a detailed note stating where you are and your phone number. Also if possible setting up some cameras that you could also communicate on, we have wyze cameras. This is only a recommendation for a short time period like running an errand, not for the 48 hr visit to your mom. Also consider unplugging the stove and possibly locking up meds.
I have left my mom for very short periods of time, 15 mins to take kid to school, etc. When I leave she is calmly sitting and reading. Without fail, when I return she is doing something scary or odd. Once she was jogging around our inground pool, another time she was picking up dog poop outdoors with a leaf and placing it inside on the table because she didn’t know what to do next with it, another time when I was just in the garage she forgot where I was and said she was going to call the police because I must be lost. Anyway, I’ve realized she cannot be left alone at all. I do have a companion come in a few hours a week, my mom gets upset that we have a babysitter for her. I’ve told her that the companion has a full house and needs to come over to get her college work done in a quiet area. So the young lady does stuff on her laptop while keeping on eye on my mom while I run errands. We are placing my mom in ALF in a couple days because it is just too hard to watch her constantly and continue living our lives.
Best of luck to you and your husband. Please keep us posted!
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NK you present your DH as being just a little bit impaired, from the way I am reading. I submit that you are like many family members, you don't want to admit to yourself how things really are. If the MRI and PET scan say Alzheimer's, then he does have significant brain pathology. Pay close attention to what the members are telling you.
I have a suggestion since he is a writer. Michael Ellenbogen wrote a book about his dementia journey. I suggest that you and your husband write a book about your journey. Follow up quarterly to denote the changes. Learn about executive function and other aspects so you can write about them. It will be very informative to other patients and to other caregivers.
There have been other members who wrote. Member "Storycrafter" wrote a book just recently. Other PWDs have written about themselves. I wanted to write my story but it's too late for me to write a book. That's why I'll keep posting, to tell as much as I can to members..
The CONFLICTS that you are experiencing over having help in the home, not taking the memory meds, not telling people, etc--these are common! I think people would be fascinated reading from both the PWD perspective and the caregiver perspective. In the alternative, you might think about videotaping your stories.
Iris
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Thank you everyone for sharing your experience and wisdom. You have officially scared me silly. Those of you who said I am too close and do not recognize the progression are right. I have said that I feel like that story of the frog in a pot of cold water on the stove with the heat turned on. It is so gradual you don't realize the trouble you are in.
I'm going to call our lawyer in the morning about the driving and try to have the hard conversation today. And I need to start making better plans about back-up.
I am learning the etiquette of these posts and my urge is to reply to every post to thank you. But I think that is overkill. So I will again tell you how much I appreciate this forum and all of you being willing to share. I'll have to pay it back as I gain the unwanted experience.
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NK123 wrote:
I'm going to call our lawyer in the morning about the driving and try to have the hard conversation today.
Before you have the hard conversation, please follow this link. Dementia and Driving - with Teepa Snow of Positive Approach to Care
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I am a firm believer in bringing in help ASAP in some form or shape. A yard man, a house keeper, a teenager to walk the dog. I have witnessed my elderly neighbors and elderly friends age in place in their own home, while caring for a spouse with dementia.
It just seems to me that our PWD do better day to day when they are accustomed to people coming and going. Just my 2 cents. I wish you the best. I'm sorry this is happening to you.
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One thing I’ve learned since my husband’s diagnosis of AD in 2015 is that each day is different. You never know when a new, more dangerous, symptom will appear. For that reason alone, it is not safe to leave your husband alone.I am facing a similar dilemma. My 99 year old mother had a brain bleed and was just released from the hospital. She has a 24/7 aide who takes good care of her but I feel guilty about not being with Mom. My husband will not let me out of his sight and he becomes verbally abusive to his aide, who lives with us. I cannot leave them alone. So, my brother and one of my daughters are there for my mother, who has been understanding about my not seeing her as often as I used to do. I cannot cut myself in half, with one part at home with DH and the other hundreds of miles away with Mom. Right now they are both safe and both well cared for. With dementia, our goals and plans require readjustments.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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