So hard to fathom it again

Suziesb

After caregiving my mother with AD, she passed away in April of 2020.  Now I find myself reading up on all of the symptoms of Alzheimers again, as I see signs in my 63 year old partner.

It feels surreal. These are the symptoms he is exhibiting:

Repeating questions over and over

Forgetting things he has already told me

Anxiety to the extreme 

Forgetting directions to places we have gone to several times

Poor driving -- we were our first post-covid trip out of state and I had to take over driving; he almost got us killed three times with distracted driving (this is unlike him)

 I spoke to his brother today, who is an internal med doctor. He shares my concern and feels he should get a CAT scan and be seen by a specialist. How to broach this with my partner?  I'm hoping his brother will be able to talk with him because I know my partner doesn't see a problem. I read today what Iris L. said....it is called Anosognosia. (Thank you, Iris).   I'd never heard of this before, but that sounds exactly right.

We don't live together but we have been together as a couple for 15 years. Our plan has been to move in by retirement in a few years.  I feel selfish saying this but I keep thinking that "here I go again" with caregiving for the next several years.   I love him and I will stay by him. He doesn't have any children or family in our state.  His one brother lives very far away.

At any rate, I know first we need to get his diagnosis and I am jumping the gun. It's just that my gut feeling is that something isn't right....

Thank you, friends.

Crushed

DW Was diagnosed with MCI of the amnesiac type in Sept 2010. She was 58  My mother died of vascular dementia in October 2010 after living with it for 10 years.

I assure I know what you mean  

Ed1937

Suzie, welcome back. Sorry you are going through this again. You said "he almost got us killed three times with distracted driving (this is unlike him)". Please make sure the doctor knows about that. He will likely tell him he can't drive any longer. If he should have a bad accident, he could lose everything he has. With the doctor telling him he can't drive, it takes the pressure off you. It's the doctor's fault, not yours.

But the good news is that there are many conditions that can mimic the symptoms of dementia. These need to be ruled out. If something is found, it could be that it can be treated, and symptoms could disappear. Best of luck to you. I hope they can find something.

You should also be looking for a CELA (certified elder law attorney). If he does have dementia, this is something you will want to take care of in the very near future. Waiting could be very costly.

Cynbar

It certainly does sound like dementia, although we all hope for you that it turns out to be something medical and treatable. But it seems that now is the time for you to do some heavy thinking about what the plan will be moving forward, if it is indeed dementia. You are not married to him, nor do you share a home. How much are you going to be able and willing to do, as the (possible) dementia progresses? You know from your mother how it will go, he will need more help and supervision with everything, and it will eventually get messy (literally and figuratively.) Are you willing to move in and be his caregiver, and if so, to what point? There aren't easy answers here. Of course, arrangements need to be made for him to see a doctor and get a diagnosis. At that point, it will be time to talk to him and his brother about what the future will look like. Financial and legal arrangements will have to be worked out, that is what the certified elder law attorney is for. But I think it will start with you, and what your role would be as this unfolds. For your sake, don't let yourself get pushed into more than you are able to do. It's a big undertaking, as you already know.

Marie58

Suzie, I'm so sorry to hear about this. Trust your gut...something isn't right.

I can relate to your fear of broaching the topic. I felt that too, and prayed and prayed about how to talk to my DH when he starting showing symptoms. I didn't realize that he was having a lot of problems at work. Finally, one of his coworkers said something to him. He came home one day and said she told him he should see his doctor. He made an appointment that day!! My prayers were answered. Perhaps you could talk to his brother and he would talk to your partner. That would take the burden off you, then you can walk through the process with him.

Suziesb

Thank you all for your input. I spoke to my partner's brother today. He will be coming for a visit in July for 3 weeks and our plan is for him to discuss the issue then. The brothers are very close and I'm hopeful that my partner will take the advice of his doctor brother to go for testing and a specialist appt.  Also, as far as an elder care attorney. Yes, definitely! I did this with my mother and great advice!  I should do this as well because you never know what can happen.

My partner has a will and attorney as he has several properties.  Right now his brother and I do share the POA for him. He had cancer two years ago and this is what spurred him on to put his affairs in order. 

I feel very stressed until we know what's going on with him. And then if it is a type of Dementia ....as we all know it is it's own kind of stress being a caregiver. 

Kenzie56

Our stories sound very similar. My MIL passed away with Lewy Body Dementia May 2020. My DH and I were her caregivers. Like you, I read every book, article, attended seminars, etc., and still it was quite a roller coaster ride. In 2017 my DH started showing signs but was in denial...I may have been in denial, too, because it was too mind-blowing. (He was later diagnosed with Mixed Dementia - Vascular and Alz). If there is any advice I can lend - get your doctor to tell your LO not to drive! Get his brother to take his keys if you have to. I didn't realize how impaired my DH was until he T-boned a dump truck by running a red light (distracted) in 2019.  He drove the car when I was in the shower - he was not severely injured, but his car was totaled and I had him surrender his license. I insisted at that point for tests and a diagnosis. I later learned that if you allow your LO to drive your car, and you know he can become distracted or impaired, you can be liable if he gets in an accident. My trial date is in 2022.

I went back to rereading all the books as his symptoms are a bit different.  I feel your pain and am so sorry you have to get back on the rollercoaster - it is exhausting to have been the caregiver to one LO, but when it happens again - you just feel crushed.  You will find the strength - just be prepared...the journey could be a very different experience. I am so glad you have his brother to support you, but try anything to get him off the road.

CStrope

The driving issue seems to be one constant for everyone dealing with a LO with Alzheimer's or other dementia.  I recently purchased a new car, and with the new technology, and push button start my DH does not know how to drive it.  We have an older car that he normally would drive, but we never started it back up after the winter months, so it is currently out of commission.

Not being able to drive has been such a  major source of problems in our house.  I keep telling him that for his safety and the safety of others I just don't feel comfortable letting him drive.  Finances seem to be a topic he's been obsessing on lately, so I tried to explain to him that if he were to get in an accident, it could make us lose all our money and our house. (tried to put it in terms he'd relate to).  He said that anyone can get in an accident, why is it such a problem if he did.  I told him that if I got in an accident and they found out I was diagnosed with Type 2 diabetes, we would not be sued, but if he got in an accident and they found out he had been diagnosed with dementia we would......and that is the big difference.  He's been quiet about the driving for a day now.  I'm hoping that battle is finally over, but I'm sure it is not.

In the meantime, the older vehicle will stay out of commission so his driving is not a possibility

Tdrinker46

Live in Maryland.  As soon as diagnosed the doctor said law required the MVD be notified and his license would be suspended.  He could request a test, which he did, but forgot about it the day it was to happen.  Made it easy for me, the doctor and State say you cannot drive (not me).

Suziesb

Kenzie, omg...yes, similar stories.  It is heartbreaking on the boards how so many of us have more than one LO we have been caregivers for. 

I am worried sick about my partner's driving.  He got a Tesla about six months ago and still can't master it. He is a car guy and this is even his business so this should have been a clue to me. He also is a techie guy with a computer brain so I know in my heart something isn't right.

The sooner we can find out a diagnosis the better.

Kenzie56

We are all here to support each other and learn even more. I just joined this message board  because this second time around is even lonelier and hearing I am not alone makes my life a bit calmer. Keep in touch and let us know if your LO gets a diagnosis. Denial is so difficult to deal with.  I heard "I'm OK - it is you that is delusional" so many times when I tried to talk to him. Hang in there - you can do this!

ButterflyWings

Hi Kenzie - I'm so sorry to hear what you and others are going through. I am trying to survive my DH's journey with AD (currently stage 6b-c). After a few years of stress and struggle realizing something was either wrong with our marriage or my DH's brain, we finally found our way to the diagnosis. Dementia of the Alzheimer's type. Incurable, pretty much untreatable, and not supported financially by the medical or social safety net system. 

So, after losing my LO to a hands on/line of sight, demanding debilitating disease, most caregivers will be worn out and with empty pockets unless there are major personal resources going in. (That's not us unfortunately). I just can't imagine going through this caregiving struggle twice, especially back-to-back. 

I'm sharing this article on anosognosia to provide some ideas that may help in your situation. It helped us a lot when I learned this is not denial at all.  Best of luck to you. 

6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

 

Dutiful One

Suzie,

I am right there in the boat with you. I began noticing unmistakable red flags in my spouse during my mom's last couple of years.  My mom's diagnosis was difficult to reach, perhaps because of her array of symptoms that were often all over the place, the fact that she "presented" well even into middle and later stages, and the lack of good diagnostic and care services in my small area. Now I'm back in that same situation with my husband. I had to aggressively advocate for my mom, and the decade or so from start to finish took a toll on me. Your stress is understandable. It sounds like you are on the right track with consulting with your partner's brother, addressing driving, looking at the legal aspect of things, and getting your ducks in a row.  

You are definitely not alone!

Arrowhead

My wife was, and to a degree still is, very good at hiding her symptoms. When I took her for testing, I didn't tell her what the test were for, just that she needed them. Otherwise, she wouldn't have gone. For years, if she heard me mention her having Alzheimer's, she would deny it. Now, she either doesn't notice it or she doesn't understand it. 

If it turns out that he does have some form of dementia, make sure all of his legal matters have been done or get done. That includes a Will, Power of Attorney, HIPPA, and Medical Directive. You might consider having him set up a Trust.

Everyone on the Forum hopes its not dementia. But be prepared, just in case.