New and floundering

Katielu

Hello. I am new and trying to find my way. My husband is 71, history of a brain injury and family history of vascular dementia. Memory loss has been noted for about two years, but he has been getting worse the last 3-4 months. I have found bills not paid, so I am now trying to figure this out, he has always handled our finances and done a great job. He had a specific method for tracking and paying but now says he “ doesn’t need that” . I let him do his thing, then I go behind him and double check.

I feel like I am sneaking around, but I am not sure what to do. The repeated questions make me sad, the mood swings make me nervous and edgy. I am going they and slowly organizing and simplifying everything in our house. He still drives, but nothing long distance ( Wei e in a small town. Sometimes he has a few days that go so well, I think I have exaggerated in my mind, that I am making it seem worse than it is, then something g happens and I thing “ there it is”.

I don’t know what to think, Neuro Paych veal is in January, nothing earlier. Not sure what I am looking for here, maybe for someone to tell me I am NOT nuts? I feel that way sometimes. 

sandwichone123

Hi Katielu,

You are not nuts. We all have that feeling of, "maybe it's not that bad, maybe I'm making it all up..." And then reality bites all over again. Then we have feelings of, "maybe I'm losing it too, maybe I'm the one that can't hold it together." All of those are perfectly normal and part of the "now you see it, now you don't" of the early/mid stages.

And friends and family! A whole nother kettle of fish. I take bets on how long it will take before they tell me, "he looks fine to me!"

Sneaking around is your new best friend. That's how you set him up for success, and how you mitigate failure. It's a kindness, but it sometimes feels icky.

Dio

Katielu, sorry you're having to join this group! 

Trust your intuition. If something doesn't feel right and you have evidence to support that feeling, e.g. bills not getting paid, it's the first tell-tale sign that something is wrong. I found out later (when I had to take over paying the bills) that my DH didn't pay the balance due (for some strange reason) on a major credit card which resulted in a penalty plus interest the following billing cycle. It took me a long time to figure out why these extra charges were incurred. He had never missed paying a bill on time or the wrong amount. That was the beginning of our arduous journey with dementia 10 months ago.

And speaking of sneaking around, I had to wait for DH to go on his walk in order to run to the bank to deposit a check. It was a small reimbursement (laughable amount, really, only 1/6 of original charges) from the insurance company. He refused to deposit it believing that it's not real, that it's fake... and to think how long and the effort it took me to get this invoice reimbursed... I had to deposit this check, period! Thank goodness he signed it the night before. But when he woke up in the middle of the night, he claimed that the check was fake, and when morning came, refused to deposit it. Alas! After his walk, he completely forgot about the check already.

Joydean

Katielu, hi and welcome. No you are not nuts. Sandwichone said it all. We all at first wonder is it me or is this the way our life is going. You have to take care of everything now. You will be doing the things that you may have never taken care of before.  If you have children, remember when they were little you took care of everything for them, now you have a child in a grown man’s body. 

You’re not alone, we are all going through this horrible journey. We are here for you. 

M1

Welcome to the forum Katie, you have come to a good place.

You are not nuts at all.  Most of us underestimate how advanced the dementia is, not overestimate.

You need to get control of finances and driving sooner rather than later.  These are huge, huge, risky issues.  If you don't already have power of attorney for finances and healthcare for him, you need to get it ASAP.  The best person to do this is a certified elder law attorney (look by location at nelf.org), and you do NOT have to wait on the neuropsych evaluation to get these things started.  The sooner, the better--you want to do it while he is still able to sign.  The attorney can also help you with financial planning--you need to think ahead about the potential cost of memory care in the future, and whether you can afford it privately (most cannot) or need to think about eventually applying for Medicaid (differs by state).  

You should also read up about anosognosia--most people with dementia don't realize they are impaired, and you cannot assume that you will be able to discuss these things rationally with him.  You are not sneaking, you are doing the right thing, and it will get easier with time.  The hard part is losing that partner you're so used to having.  You may have to start intercepting the bills before they arrive, or arrange autopay as much as possible.  If you have a banker who knows you both, that can really help.

Taking the car keys away is huge for everyone, but needs to be done.  Can put you at risk for everything you own (not to mention the risk of physical harm to himself or someone else).  Some places have driving assessments, but there may be long waits (there was for us) and they are only a snapshot, have to be repeated.

Good luck.  Read a lot of threads.  There are many wise and experienced caregivers on this site who can and will help, and there is more practical advice here than anywhere else I have found.  Let us know how it goes.

Ed1937

Katielu, welcome to the forum. Sorry you have a need for it. I'm posting a link for you that is highly thought of here. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

Yes, it's up to you to sneak around just so you can keep on top of where he is in this disease. Please be especially careful about how he is driving. It only takes one bad accident to wipe out any savings you might have.

Pat6177

Welcome to this forum, it will help to keep you sane!

Driving is a huge risk. Not just because the PWD can get lost but because they can’t figure out how to react to driving situations. Their thought processes are slow, their judgment is broken and their recognition of how fast another car is moving is altered. Here’s a link to a thread on the Caregivers Forum. https://www.alzconnected.org/discussion.aspx?g=posts&t=2147561911

Please read it, there’s a lot of good info in that thread. 

Katielu

Thank you all, for sharing your knowledge. 

The POA is done, I have an elder care attorney and he is aware of what I am dealing with. I understand what everyone is saying about the sneaking around but it really doesn’t feel good. At the same time, I am missing the person who I discuss everything with, who helps me make decisions. I am working all our finances behind him, when something needs to be paid, I will suggest we “ look at our up coming bills” together and we sit down and go they it all, I point things out. 

I will look at all the links you shared with me. Not sure what to think about what you say about the driving. I watch him and he does fine. The reason I don’t let him drive to unfamiliar places is that I don’t want him trying to follow a map and driving. I am 12 years younger than he is, still working. I am concerned about caring for him as this progresses.

Thanks for the support.

JC5

You are not nuts! I feel I am in the same situation. It took me weeks to figure out his username and passwords for the online bills. I finally changed almost all to my name so bills will be paid. DH was diagnosed two years ago with VD. He too had become worse over the past 4 months. Not horrible but extremely trying. Sorry you have to wait till January. Day by day

MaryG123

I know what you mean Katielu.  We are just starting the diagnosis process with my DH, and sometimes I question myself about what I'm telling the docs.  Some of it sounds so benign, but it's the patterns and overall changes that we're seeing, and they're hard to define.  Fortunately, our primary care doc is very supportive and understands our concerns.  Since he had a scary episode that could have been a TIA, she sent him for blood work, carotid ultrasound, and a CT scan yesterday, none of which were remarkable.  She is setting up a neuro consult, but that might take a while.  I'm sorry you need to be here, but the forum members are a wealth of knowledge, and so caring!

Faith,Hope,Love

Hi Katielu and welcome!  I too am fairly new to this forum.  You will come to admire and have a lot of love for everyone here.  Everyone is at a different stage with their LO but all have good info to share.  I'm still not comfortable with all the sneaking around I have to do either.  It takes a lot of time and effort to be sneaky.  I'm also not comfortable with the "fiblets" I have to tell him.  But those too are necessary.  I'm not sure any of this will ever become second nature with me, but I do find it absolutely necessary.  It's the only way I can keep track of bills, maintenance and everything else that needs to be done.   It's been hard taking keys away from DH but according to our attorney absolutely necessary.  He really doesn't realize I've done that.  Once again, I've had to be sneaky and use "fiblets".  When asked for the keys, I usually tell him I gave them to him, and he must have misplaced them.  He looks for them for a while and then forgets about it.  I've found I have to get creative to keep him safe and me sane.

Rescue mom

Just a couple things I had with my DH (now midstage dementia):

I thought he was absent-minded, or unwell, etc. with things that were not done or done only with lots of “encouragement” direction.  I must be a “witch.” for caring/wanting them done. He’ll be better, later….(the big real delusion)

Then, all in about 2 weeks, my hubs was brought home by police after being involved in a multi-car accident. DH did not know where he was, where he wanted to go, or why he was in the car. (he was not hurt, didn’t see it until afterwards). 

He was, in fact, going to his doctor, less than 2 miles away, where he’d gone for 40 years. The ability is lost that fast.

A few days later I got a call from our CPA who wanted to see me. It was tax time, DH had taken him all our tax info, as he did for years. Except this time he gave the CPA a bunch of old greeting cards, some mag. subscription  cards, some utility bills, an old newspaper puzzle. Etc.

This was after I’d been untangling other unpaid bills he’d said he was handling, as always. The CPA, as it happens, said he often has to break the news…

We had major structural damage in our house b/c I believed DH when he said he had it all under control, was taking care of it. It’s a holy miracle no one was hurt.

I had to “sneak” around with all important mail, paperwork, medicine —even throwing out trash, b/c he’d bring bring it back inside, even old food leftovers. Gross doesn’t come close. Other things got lost.

 It’s not sneaky, it’s what we have to do to protect them and us. They have a disease. Their  brain is broken. It’s similar to having a toddler. Sometimes you have to do things they don’t like, for their own good.

Sandwich, it made me so crazy when somebody would see him for 2-3 minutes and say”are you sure he’s sick? He looks fine to me”. (Because I dressed and bathed him) Of course they didn’t even try have a conversation with him..

Katielu

Well, I can see how this forum is helpful. I’m not sure I feel “ better” but I feel less alone. Than you all, so much, for honestly sharing your stories. For having to be tough, we sure are vulnerable.

On a funny note, my dog is living his best life, his dad doesn’t remember he has already fed him, and feeds him again. I don’t correct him, the food has already hit the bowl. I have a new plan to help a aid this, but I have a big ( getting bigger) happy dog!

ImMaggieMae

KatieLu, welcome to the group we all wish we didn’t have reason to join. I was in denial for a long time too, until I couldn’t deny it anymore. You’ve been given a lot of good information here. Please seriously consider taking the car keys. If he were to get in an accident the consequences would be devastating, both financially and morally if he or someone else was injured or killed. 

The most important thing I had to learn was to stay calm, or at least pretend to stay calm during all the strange new behaviors that came along with the disease. Arguing, yelling or crying did absolutely no good, in fact they were very detrimental. He wasn’t at fault for the changes in his brain and there was nothing he could do to stop them. I was the only one who could change. Caring for him and protecting him became a full time job. Finding a neurologist that we could get into took over 7 months, even with an urgent referral from his geriatric PCP. Medications were the only thing that helped bring some calm to our lives and it took a trip to the ER and a week in the hospital to get them straightened out. And they still get tweaked now and then.

I hate paying bills, but it’s my job now, even though it was something he enjoyed before. It’s now way beyond his ability.

M1

Katie one more story-the pet stuff is kinda funny, kinda not. If he's doing things like that already he's further down the road than you think.  The incident that landed my partner in the psych hospital and then memory care was threatening to come after me with a knife when I wouldn't give her the truck keys to go buy cat food after she'd fed our two outdoor kitties twenty four cans of food in three days.  We have a similar age spread, she's 15 years my senior.

OOh and one more reference that may help you-google Tam Cummings stages of dementia. May help you ballpark where he is.

Just Bill

We used to have 3 dogs, 2 were litter mates 3 was an abandoned dog we took in. The 2 dogs have passed on but when they were alive one of them was food obsessed. That dog knew my wife couldn't remember if she fed them or not and took advantage of her more than once. They were half border collie and half chihuahua they were geniuses compared to dog 3. They were great dogs Larry passed at 18 years old and Moe passed at 19 she was the food obsessed one. I really miss those 2 dogs. Moe could understand the words  I can't remember if I fed the dogs. I would ask Larry if they were fed she wouldn't lie, but Moe anything for food.

Katielu

Thank you so much. I did find an algorithm that my Heath system uses to gauge the driving, according to that, he is still ok to drive. Again, if he has not been there before, I would and do stop the driving, I lie, but he doesn’t get to drive.

I will look at the online resources to help with staging, thank you.

I used to get irritated that he didn’t go anywhere of someone anything, unless I go. Now, I guess it’s a blessing. He only drives a short distance, less than two miles, a couple days a week. If I am with him, he will go further, but not alone.

But I will consider all that is said. My son is coming to the house this weekend, wants his dad to “ take him” to the store, so he can watch him drive, we’ll see what he says. 

Hoping to figure some of this out so I can sleep better.

And, I am so sorry for all of you, I am only at the beginning and I miss him. He is not the person I married 28 years ago.

jfkoc

I do not know what you found online about driving but it sounds like it had nothing to do with judgement and reflexes. It also probably did not discuss the liability issue when driving with a dementia diagnosis.

Please, neither you or your son should be the  judges of overall ability unless you arrange to have someone/object suddenly appear in front of him while he is at the wheel. That is the situation you need to fear.

Getting lost is is least of the problems.

Hoot619

What they are trying to say is ,your LO getting into a accident hurting or much worse killing someone.  You can or could lose everything you have.  Savings, home etc. Please read what Rescue Mom wrote.  Hoot

Pam BH

Maybe this will help with the fiblets. When our loved ones are in the middle of a hallucination or delusion (altered reality), we need to enter their reality and respond in the way we would if it were real. To them it is 100% truth, so our response is not lying. Because it is their truth, arguing or trying to convince them it's not true will only make things worse. 

As far as driving, not only could you lose everything you possess, your loved one could end up in prison. My understanding is their dementia may or may not be a mitigating factor when it comes to sentencing but doesn't matter in the guilt phase. I believe more states are taking action against the family members of people with dementia who have not stopped them driving. If you're beginning to question his ability, he's probably already there or near.  Best of luck to you in this awful new life we find ourselves in. 

Katielu

I am an RN and a provider directed me to an algorithm that reviews decision making, processing, levels of awareness the patient is in, that providers use to help guide families in decision making for patient. It is not a google search. I know better than that.

I do understand what you are saying. I will have a conversation with him, not anticipating this going well, as his PCP has told him he can continue to drive, the neurologist did as well. But I hear you.

Thank you 

Katielu

Yes, what rescue mom said if horrifying. I guess I am trying to catch up to our lives that seem to be spinning out of control.

ImMaggieMae

Katielu, how long ago did his PCP and neurologist tell him it was ok to drive? Did you hear him say that? What is his diagnosis?

Honey Deb

Hello all,

First time posting! Right now I am feeling overwhelmed with seeing my husband day to day suffering through this and seeing his face filled with anxiety & frustration.  He was diagnosed in January of this year after my insistence that he see a doctor. The diagnosis of Alzheimer done by Neuropsychologist. Understand, he is proud that he has made it to 75 yrs old having to take no medication, so he is physically fit. But sadly, dealing with with loosing his memory, how do you accept that.

These last two months though, there are more signs of symptoms. His driving, finances, using his phone and computer. And it is really getting to him. What do I do? How do I help? I feel so alone. Today I’m mentally brain tired. Now, I’m feeling like I’m on alert all the time, because of his fitness, he is very impulsive to just get up and go. I am using Google maps location sharing right now on his phone. But the problem is he may forget his phone and take off in the car. I believe I’m at the point of getting his keys. 

He has four adult children and only a daughter talks with him. However, She is still in denial which is not helping. We both are retired and live in a small town in which we have no family. I know I have a lot ahead of me, but today I just needed to share with someone who understands where I am.

I love him dearly and just thinking his memory bank is being erase like a computer database hard drive, I cry. Thank you all for letting me vent, God bless you all during this time.

HoneyDeb

Katielu

ImMaggieMae, thanks for asking. We saw his PCP in June and Neurology in July and yes, I did hear them both. He does not yet have a diagnosis. Just the history, and changes I have noticed. Repeated questions, disorganization, moody. With the family history and his past brain injury, along with my reporting, the PCP and then Neurologist felt the Neruopsych testing is needed. He passed the mini mental exam 5 weeks ago.

Katielu

HoneyDeb, we are new to this as well. My brain is tired all the time. I work during the day, the. When I am done, I am on to whatever come next. Some days are still so good, I am so grateful to have him.  Other days, I just wonder what is happening and what ever it is, can it be real. We don’t have a diagnosis, but I am confident that is where we are heading.

Honey Deb, I’m sorry and I understand the feeling you are alone. I feel that way often. I’d hug you if I could. Sometimes it just helps to be heard. So, I hear you, and I THINK I get it.

Belldream

You are definitely not "nuts" as many will tell you here. I'm sorry you are in a position to be here at all, but I think you'll find community here with this group. The way I describe Alzheimers/Dementia to those who ask is its like 2 steps down, pause, one step up, pause, 2 steps down, pause, etc. Right now, i think my DH has taken a few steps down, and im just holding my breath hoping for a little improvement soon! I have experienced the same as you, where DH paid all the bills, took care of our car maintenance, and general maintenance in and around our home. He could fix practically anything! Now he can't do any of it. He can't even remember how to do any of it so he can't even coach me. One big blessing recently was his car stopped working and he can't remember and doesn't have the strength to fix it. He doesn't "know how" to drive my Prius so he can't drive anymore, thank goodness. I am so grateful for this group! I've learned so much and I think you will too.

Belldream

To add my experience to the driving piece... my DH was a race car driver (drag racing), owned a speed shop, was an auto mechanic, and an auto parts guy for most of his teen and adult life. He built his own race car and rebuilt engines too. He even took flying lessons. To say he was experienced and expert behind a wheel is an understatement! I was under the delusion that he was fine to drive the 1.5 miles to the grocery store, despite what doctors, and those experienced caregivers told me. I feel so darn lucky nothing bad happened. His car broke and he can't remember how to fix it so now he doesn't drive. It's such a blessing because his condition deteriorated so quickly in the past few months. It's hard to see immediately because you are living it daily. But what I learned is that this disease sneaks up on you and you can't see the moment of change. I understand and certainly respect your judgment for sure, I've been there myself! Just be careful. My DH is only 63. I hate this horrid disease for taking him from me!

Dio

I have removed/hidden all car keys! No more driving, period. This is the one issue that's non-negotiable. And I'm not waiting for some doctor or authority figure to tell us so.

I truly understand the frustration a PWD feels when their lives have been upended and liberty taken away. But the potential risks are simply too great.

Rescue mom

Honey Deb— you will get more and better answers if you start your own separate thread with your specific questions. Right now you are kind of hidden at the bottom of an older thread on different issues. Just click on the green box near the top right side, where it says “add topic” and follow the prompts.

jfkoc

Katie. It sounds like you have good medical care but please learn all you can about the diagnosis process and be certain all steps are taken.