Newly Diagnosed Partner with EO AD. What to expect?

Novice AD Partner-Ca

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

Welcome to the forum. Sorry for what is happening with the two of you. But this is a great place for help and understanding.

One of the first things you should do is to apply for Social Security Disability. With a diagnosis, he should be approved quickly. Next comes a visit with a CELA (certified elder law attorney). He will need to have you or someone else for his POA, and they can help with that, as well as other things that will be needed.

Here is a link to help you understand what lies ahead. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

This only scratched the surface, and others will have a lot more input,

You can read a lot of posts here to give you a realistic view of caregiving.

SusanB-dil

Hi Novice AD Partner - welcome to 'here', but sorry for the reason.  Ed has replied a good response for you. Just want to add that it is difficult to know just what the progression will be, as each person is different. MIL has alz and vasc, in which case she will plateau for a while, then take a stairstep down. Her 'declines' are sometimes more subtle.  My mom has alz, which is a more gradual decline overall.  Both LO are on different meds, hopefully keeping them stable for a while longer.  So basically, nobody will be able to tell you how quickly, or slowly, things will progress for your partner.

Agreeing with Ed, do get POA as soon as possible, also Health-care HIPPA. I also hope your LO is not driving?

Yes, it is disheartening.  So sorry you find yourself in this predicament.

jfkoc

My husband always said "don't say monster' which basically meant do not borrow trouble.

At this point you have no idea how long you are going to live a relatively active life nor do you know the challanges you will face.

All you can do is be prepared which means getting legal and financial matters in order....health directives, DPOA, wills Trusts etc.

The other other extrememly import thing to do is to become an educated caregiver. Having a good idea of how to communicate etc will make your journey much, much easier.

Take a deep breath, give your husband a big hug and put one foot in front of the other. We will be with you every step for support and to share.

Judith

GothicGremlin

Hi there Novice AD Partner --

I think we've all been where you are, so we understand, and are here. 

I agree with everything everyone else has said (especially all of the legal issues), and I'll add a couple of other things.

In my case, my sister was diagnosed with early onset, like your husband. She was 59 at the time, and looking back she was having issues for about seven or so years prior to her diagnosis.

What I also did with Peggy was to find out what kind of help she would be willing to accept and to be up front about it with her. For example, when she forgets words, would she want me (and others) to help her with them. She said yes.  Another big one was whether she wanted to know what was coming up, health-wise.  She only wanted to be told if she asked, but she didn't want me to tell her otherwise.  So that's what we've done. It's a way that I can preserve some autonomy for her.

As far as how quickly this will go, I don't think anyone really knows. It's a very individualized thing.  What we were told in the beginning was if you have bucket list items, do them now, don't put them off. Enjoy everything now.

Arrowhead

I have been on this journey with my wife for 6 1/2 years now. Every victim of this disease is different and has a different progression. There is only one thing that you can expect. I'm sorry to say, but it will get progressively worse. There will be days where you will wonder how much more you can take, but you keep going anyway. At times you may feel guilty that you can't do more but don't feel guilty. While you are taking care of him, do not forget to take care of yourself as well. Seek out those who can fill in for you at times so you can take a break. This will become more and more important as time passes. You can handle this; you are stronger than you realize.

Iris L.

I am responding as a person with a dx of cognitive impairment not otherwise specified.  When I was told by a geriatrician, "you have to accept that you have dementia!" I fell into a deep depression.  I came out only after I developed the philosophy that I was going to get control.  Not get control of the disease, but get control of what I could control.  I became serious about Best Practices.  Exelon helped me with my speech.  IMO, a trial of medication is worthwhile. . I got involved with these message boards and learned what I was up against.  I got involved with a Memory Club.  I went on an Alzheimer's cruise.  

The legal and financial steps are important.  Driving has to stop, now!  He is already inattentive.  Read the many driving threads on this board snd on the Spouse/Partner board.

Michael Ellenbogen has posted several of his interviews.  He was diagnosed at an early age as a high level executive.  Your LO needs to retire.  Depending on the circumstances, he can take sick leave pending completion of his documentation for long term disability.   Consult the appropriate legal counsel before discussing with the boss, because they would most likely fire him.

There is a group, Us Against Alzheimers.  You and he might want to look into that.  Michael knows more about that.  As you read more threads, you will learn more about what to do.  Your LO can post on the "I Have Alzheimer's" board.

In my case, after several years, I had more testing whish revealed that I do not have Alzheimer's Disease.   But I continue to have my specific cognitive impairments. 

Iris L.