New Diagnosis of Partner with EO AD.

Novice AD Partner-Ca

I posted this originally in the wrong forum, so I'll post it here as well. Apologies.

Hello

Yesterday my partner (57yo) of 30+ years and I were given the news that he has AD. I am overwhelmed with shock and grief. My life partner, my best friend, my only friend, actually. And I can't talk to him about it, about how I'm feeling. It is the most horrible thing I've ever experienced. I can't believe it's true. I feel as though I'm in a bad dream, and I just can't wake up. I can't stop crying.

It has been more than three months since I insisted he come to the doctor with me to have his mind checked out, following a near miss in the car due to inattention. We had just returned from an overseas "holiday" where I became concerned about his vagueness, absent-mindedness, and difficulty with simple tasks, understanding how things worked, decision-making, confidence in speaking. Also he did not seem to understand what I was saying, and was going off on tangents or making irrelevant replies. We love remote wilderness backpacking, and once we got out on the trails he was much better, an enjoyed the 8-day experience. But back in town, trying to deal with hotels and changing circumstances, he was just hopeless.I felt as though I were travelling with a child. And I am not a parent. I found it stressful and exhausting.

Much of this was not very new for him, it had been a gradual progression over the past 10 - 15 years, I would say. He's always been disorganized, absent minded and forgetful, and lacking in drive and initiative. But delightful, humourous, gentle. A bookish teacher. A conversation with him has always been impressionistic and meandering, rather than linear and logical - always, in the 30+ years I have known him! He's always struggled with technology, and only learned to do things on phone and computer on a "need to know", rote learning basis. But lately he'd struggled to manage the app he needs to get work through his agency, and would write down a script before making phone calls to deal with things. Then he would ask me to dictate what to say, one word at a time. Following instructions, spoken or written, became a major challenge. And what other people noticed was word-finding issues and loss of his train of thought mid-sentence.

So things got pretty bad, I guess, before I noticed the problems. Travelling overseas put them in the spotlight. A series of tests and consultations. GPs, neurologist, psychiatrist, mri, PET/CT scan. And yesterday, the diagnosis. 

I can't deal with the long-term yet. Nobody seems to be able to tell me how quickly this will go. Do we have a few years of relative normality? With adjustments, can he still work, travel, backpack in the mountains? His great love is the outdoors, nature. He is trying to stay positive, hoping to find things he can do to "reverse" the disease. He refuses to believe that the brain cannot be healed. He is becoming depressed and quiet, moreso since all this contact with the medical professionals - usually fit and healthy, this is all new and unwelcome! -  the realization that there is something wrong with him. His self-confidence has plummetted, it is heartbreaking to see. I cannot sleep. I don't know how I can bear this.

I would be very grateful for any shared experiences and advice. Thank you in anticipation.

Ed1937

You didn't really post in the wrong forum. Many of us visit both forums, and are at least somewhat active in both. I saw your post in the Caregiver forum, and replied.

dayn2nite2

How fast/slow is individual.  I would check with some of his work colleagues - with the level of impairment you describe, it wouldn't be surprising to find out he's had some work issues that have caught the attention of superiors.  Does he have a short and long-term disability insurance policy through work (I hope)?  That will be his parachute out before being fired if he needs it.

You may not get reliable info from him about how his performance is at work - that is why I recommend consulting one of his colleagues.

The driving/inattention has to be addressed.

Travel?  Unless you're wanting a repeat of what you just went through I wouldn't.  He should not go backpacking anywhere alone.

Another Day

Happy Valentine's Day anyway....You still love him, he still loves you. It's just so sad that you're going through this. My DH is still avoiding a diagnosis by avoiding the doctor the very best he can and when he does get seen by a doctor totally refuses any tests, procedures etc. The doctor does know that he needs to be tested and evaluated, we'll see how this goes. 

DH is super smart, a Mechanical Engineer for all of his career and has since enjoyed almost 20 years of retirement. He is aware things are not how they used to be and has withdrawn socially for approximately 8 - 10 years. My DH gave up driving on his own 2 years ago and relies heavily on me being nearby anytime we do go out...and even when we're home alone. I took over the bill paying and some of the financial decisions 4 or 5 years ago. He still wants to "think things through" on financial decisions, but again, will look to me to help with that process. As I've been through the researching for information process and myself being in denial for the first part of when his behavior(s) started changing, it's been a drawn out realization that - it's real. I think that's maybe where you are. 

Helplessness is also real. We feel helpless that our loved one is being stolen away from us and there's only so much we can do. I do focus on diet and nutrition, vitamins and supplements and some have actually made a difference. Here's a piece of advice a friend gave me long ago: When something frightens you learn everything you can about it. It takes away the fear of the unknown. If all of this doesn't scare you, I just can't think of anything else that would.

Like your DH (Dear Husband), mine also reached the point of no drive or initiative. That is a rough one. It became the 'understood' that if something broke, it stayed broken. Whereas in the past if something broke, say the dryer, he would simply fix it as if it were no big deal. A faucet dripping, no problem, he'd fix it. That changed along with everything else along the way. My DH doesn't welcome strangers coming into the house, so I discovered You Tubes to learn how to repair some things between the two of us. It's also handy if you have a laptop to carry to wherever the problem is that needs fixing. 

The least favorite stage, so far, has been the shadowing. He went through multiple years of sticking to me like glue and had "suggestions" for how I should do every little thing. He couldn't perform the task himself.....but, was still seeking to feel like he was in control of what was going on. I was still in denial at this point, but it nudged me to do a little more reading and research. 

He does best when it's just the two of you out hiking. No surprise there, he's not under any pressure not to mess up in front of someone other than the one he knows loves him. My DH and I went on a picnic in the car to celebrate Valentine's Day a little early. He was perfectly comfortable, just he and I at a beautiful spot, watching nature and having a great meal together. It was enough to just get him out of the house and he was okay with that.

It's my understanding that there's no cut and dried formula for the different stages and how long each will last. I believe your DH is on the right track doing a little research, point him in the direction of vitamin's, supplements, herbs and do your best with good nutrition. Cold water fish at least twice a week is one of the things I strive for. There is a difference with my DH if I deviate too much from that. 

The best we can hope for is to slow this beast down, do what you can enjoy with him for as long as it is possible. If he actually wants to go hiking, go .... even if the house doesn't get cleaned or the laundry doesn't get caught up. We used to enjoy traveling in the motorhome, that just stopped about 10 or so years ago. I can't tell you how much I miss going places and seeing things. So, my advice to you, is to go, do and see with your DH for as long as you can. It will come to an end. 

I saved the best advice for last - Talk to God, pray. Pray with your husband. I lean heavily on the fact that God is with us, I ask his help when things aren't going good and I also thank him when something works out well. My DH and I used to enjoy our church, he withdrew from going a long time ago. I miss the church family, but I still have God to talk to. 

Don't race to the finish with this diagnosis. Miracles happen every day. Best wishes to you and you husband. 

M1

Welcome Novice.  You post resonated with me, I just this year had to put my partner of 30 years in memory care, although we are not dealing with early onset--she will be 82 soon and I am 66.  But I empathize a lot, a lot.   I kept her at home through nine or ten years of gradual decline.  It is already changing your relationship, and that is so hard.  The losses have already started.  This is the for better, for worse piece in spades.  

Pieces of early advice:  read about anosognosia, it's a feature of the disease that makes it impossible for the affected person to realize that there's anything wrong.  Much more than denial.    

High up on the urgent list because of his age:  powers of attorney and financial planning.  You need to meet with a certified elder law attorney asap--look by location at nelf. org.  There will be issues regarding disability and the need to retire for medical reasons:  the last thing you want to happen is for him to be fired and lose any available benefits, and you will need to apply for his social security.  

Good luck, you have come to a good place, but I am so sorry.  This forum has helped me enormously and I hope it will you, too.  this is where you can bring all those feelings that you can no longer share with him.

MaryG123

It’s heartbreaking Novice.  I’m so sorry you have to experience this.

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Iris L.

I posted on your other thread.

Iris L.

storycrafter

About age 57-58 my husband's brilliant career came to a shocking, screeching halt when he could no longer do his job. His supervisor kindly suggested he take early retirement or else he would be fired. He ended up put on sick leave, first short term and then long term disability. Those benefits were a blessing as we were reeling from the changes and seeing doctors and getting testing, etc. (No official diagnosis until about seven years later.)

In your husband's case, he has an official diagnosis. This is a blessing in that he can apply for Social Security Disability and have it approved fairly quickly. Before doing that, like others have said, be sure to use work benefits if possible, to cushion your process as you need time to figure things out.

Be patient with yourself and know it's an intense, steep learning curve. It takes time to absorb, research, and adjust. And... you will learn to develop a support system and gradually adapt to the situation. Continue to reach out like you are, here and locally, until you find the help you need. There are resources available to help see you through.

Novice AD Partner-Ca

Thank you. Actually he has not been working since May 2021, initially due to the pandemic and covid being out of control in schools in my country, but more recently I think he is concerned that others will notice his difficulties. He has a type of Alzheimer's (logopenic aphasia) where language comprehension and speech are the first affected. He often says he wants to go back to work, but I think that is really him saying that he wants to be the way he was before, and feel useful and competent. Teachers are responsible for children, so I've been trying to suggest it would be nice to retire. 

I think we will give travel and backpacking another go. I was really flummoxed on our last trip, the first time we'd really been away from home for about 3 years due to the pandemic. We needed to make and adjust plans due to wildfires, a tropical storm, and airline craziness, and I found him to be a "silent partner" which freaked me out. I will modify our methods to reduce stress and the need to "think on the run". Once we are out on the trail he will be happy and we will have a good time. Assuming he remains relatively stable for the next 6 months or so, that is.

I have been a bit surprised by the variation in the progress that people report. Some people seem to have ten years or more before they are really in strife, in others, the decline happens in just a few years. That makes it so hard! But one thing that I feel is important is that he can still have active outdoors life and time in nature. Walking on a trail is a simple activity and gives feelings of peace and accomplishment. 

Thank you very much for your reply, I appreciate it.

Novice AD Partner-Ca

Thank you for your lovely post. This resonates. Things are staying broken unless I organize to have them fixed. I found this incomprehensible, and it made me very annoyed. But I think he just finds even picking up the phone really really difficult nowadays. And 'shadowing" ... is that really a thing? My DH does not do that but he does try to help when I'm doing things on the computer, even though he gets pretty confused and says "I don't know how you do that! I just could not do that!" 

It will be interesting to see what the neuropsychological testing will show next week, in terms of his cognitive ability. His MMSE score when we first got back from our overseas trip was 20, but then a couple of months later when he had relaxed more and gotten over jetlag etc. it came up to 23. I don't really know what that suggests. I hope maybe he is not too far gone yet and if I can learn how to communicate and support him sensitively, we can still have a relatively normal life for some years. I hope. 

Our GP is also a naturopath and I do think the viramins and supplements he is on have made a difference. He's using melatonin to sleep, as well, and this means he is more alert during the day, which is great! He's taken up running and is motivated to do what he can to try and stabilize the condition. I do hear the repeated assertion that this disease will progress, he will get worse, and I will not ignore practicalities like POA etc, I have applied for Disability today. I never imagined I would be doing any of this, it's appalling. But I'm doing it. 

Thank you again for your lovely helpful comments.

Another Day

You asked if shadowing is a "real thing." Oh yes it is! Open a new thread on here and ask it to the entire community, you'll be surprised. It's also really challenging to the caregiver. Not only have I dealt with that and his constant "suggestions" as to how I should be doing _____whatever. Then comes the repeat questions, I answer and he asks the same question again. I answer again.....you see how this goes. Then if I change the answer he becomes irate and claims that I'm not listening! The other challenge I'm dealing with at this time is his collecting things from all around the house and garage and trying to fit them all into the kitchen and dining area and now it's seeping into the living room. Try to find joy with your LO in each and every day for as long as you can.

CStrope

Novice AD Partner-CA I have sent you a request to connect.  Our stories are very similar except that you pushed and got a diagnosis much sooner than I did.  My husband was a teacher, and also has logopenic variant.  He retired at 60 out of the clear blue sky, no discussion, no warning.  Looking back now we think he sensed he was failing and didn't want to deal with his shortcomings.  I have always been the one that took care of the house, the finances, the cooking, etc., so there were no deficits in those areas to notice.  We finally noticed major issues during COVID when he was not subbing (he had retired by then), and I was working from home.  Being around him 24/7 allowed me to see many different issues that he was able to cover up before.  Though he will say he has Alzheimer's, he will also say that's it's fine and he's doing really good.  He is not, and I am not.  It has been approx. 2 1/2 years since his official diagnosis, but a little over 8 since he retired.  Like I said, he did do occasional substitute teaching for a few years after leaving the classroom.

I welcome any discussion or questions you have, especially since we both have EOAD and Logopenic aphasia husbands.

Iris L.

I posted a long post on your other thread.  Did you get a chance to look at it?

Backpacking sounds dangerous for a PWD.

Iris L.

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Paris20

Dear Novice—You’ve definitely come to the right place. Welcome to the forum we all wish we didn’t have to join. I’ve gotten more information and support here than anywhere else. With AD  there is no single path that applies to everyone. Sadly, the only common thread is that it is terminal. How long it will take is hard to predict. My husband was diagnosed in 2015 but he showed symptoms well before that, e.g., repetition and forgetfulness. He had a stroke last May but he still knows me and our immediate family. We just celebrated his 80th birthday. How much longer he has is still a mystery. All we know is that this disease always worsens, never improves.

My advice to you is learn as much as you can about AD from reputable sources. People may try to help you with unsolicited and incorrect information. They usually mean well but don’t really help. I recall when my husband and I were just starting this journey, I finally learned to live a day at a time. Appreciate the moments that you still can enjoy. I recall setting the table for dinner one evening. I told myself that soon enough these mundane experiences would be «the good old days.» Revel in the good times that you still have. Your lives will change but right now you still have some good times ahead. Enjoy that gift.