Husband recently diagnosed

You need to get your paperwork done while your DH is still capable of signing documents. This is very, very important.

Hello Hope: welcome sounds odd, considering the “club” we have involuntarily joined. We are all standing together, supporting each other as best we can. Your situation is harder than a lot of us. My DH and I are in our 70s, so his progression is a long slow one. Early onset comes on hard and fast. You won’t have the time most of us do. So take advantage of every day he has his clarity. Get the business side done, then hit the bucket list as much as you can. Do what you need to do, and say everything you need to say.

I'm 53 and just diagnosed. I'm looking for patient support, anyone have any suggestions or links? Hubby and daughter acknowledge my symptoms (and are frustrated by them), but I'm concerned they will check out and I won't have support.

I literally feel like I've just found my home in what hope111 is saying. My husband was diagnosed with early onset APOE 4/4 in April. I am 58 and he is 64. We all have stories, daily and long-term, and too many details to go into, but all your words here help me feel so much less alone. For the past week, I've felt on the verge of some kind of mental break, and that is so unlike me. My husband and I do each see a counselor, separately (although he is not fond of going) and my husband and I see his psychiatrist together once monthly for his med management appointment.

He has an extraordinary life force, and right now, I feel like what's happening is that he's spinning faster and faster, moving faster and faster - almost as if he can't stop moving and going. It's almost as if he has some kind of super-human stamina. He is seems to be simultaneously experiencing both anosognosia and denial, until he crashes for a few hours. After he has "rested", the pattern is the same. He had to retire from his job as a driver for a large logistics company, and he's taking on multiple BIG physical projects, both at home and for friends, and I'm afraid he will over-commit, then crash, but I'm not sure it's in him to slow down. He has always had a lot of energy, and so have I, but I don't understand how this current state of activity can be sustainable.

It also seems that his concept of time is distorted. For instance, at this moment, he's coming to my office to do a telehealth call with a provider an hour from now, and he is 10 minutes from my office, but he just called to say he's on his way right now, so we will have time to get his laptop set up for the call. I feel as if I'm swept up in the "panic" or "frenetic" mode he's in right now.

Is this familiar to anyone? How did/do you manage it, yourself?

@makking my DH also seemed to have a real sense of urgency on diagnosis. He always had been energetic, and what most would call a workaholic. But he also made loads of time for family and just the two of us. After diagnosis and before anosognosia set in totally, he actually said that he'd need to work harder before things really fell apart, and he tried to do just that. I could not keep up with him during those days. It did feel manic as terei said. Plus things already were falling apart of course, and working harder ended up exhausting him (and me), and did not result in more things done correctly by any means.

DH was and still is, exit seeking - within minutes of waking up he is in "go" mode though now it is mainly just in his mind or he may get restless and start trying to get up and walk around the room on wobbly legs. Makes me sad. Yes, he was always saying "Gotta go - have to get to the office right away, etc." This may be some of what your DH is feeling too. But he can't execute (dementia executive function issues) and also the losing track of time and duration is a thing even in early stages. I guess the thing I had to do was learn Validation and Redirection techniques immediately. It helps though it isn't easy to keep being creative, calm, and rinsing and repeating. I fell short more than once.

And at some point we had to add anti-psychotic and anti-depressant to moderate his moods and quell the delusions and hallucinations. If you see a sudden swing in his behavior, check for a "silent" UTI. PWDs tend to get them and with no other symptoms except for sudden escalation in negative behaviors. It is always worth ruling out.

Read the Jennifer Ghent-Fuller article "Understanding the Dementia Experience" - which is free online. Link is here and below. It explained a lot of what I saw and gives an example of the miscalculating time, with urgency (anxiety) to go to work earlier and earlier so as not to be late. Aricept won't help anxiety I don't think. Call the Dr and alert them to this - see what they can offer to help.

https://www.smashwords.com/books/view/210580

Glad you have this insight. I believe your instincts are right on the point of Prednisone. It made my DH's behavior absolutely like Jekyll and Hyde. Under no circumstances can he be given that steroid any more, though we have found a substitute when needed that does not send him into over the top 24/7 sundowning and worse.

Watch him around power tools and electricity. PWDs become unaware of safety hazards.

Iris

If you have dreams/goals such as travel, do it while you still can.

@Iris L. thank you for that. I am just realizing this, as we near the end of the steroids, unfortunately. And maybe this is not good caregiving, but because it's in his pillbox and his favorite doctor gave it to him, it's honestly not worth it to argue over why he shouldn't take it for 5 more days when he's already been taking it for a month. It's just time for me to have a back-end conversation with that doctor.

I try to be informed about his regular daily meds, but I just let that slip by me, because it was "temporary". He got into some poison ivy and for over a month, infection kept randomly recurring in new places on his body, regardless of washing clothes and linens, OTC meds and scripts, creams, pastes, baths, staying out of heat - all the things you do for those infections. He's had poison ivy a couple of times before through the years, but this uncontrolled recurrence has never happened before - lowered immune response? I don't know. But I'm glad to know from @ButterflyWings that there is another non-steroidal option if it happens again.

I sometimes feel as if I'm trying to study for a degree in pharmacology, so that I CAN advocate for him. He seems to be intolerant to several meds, and there seem to be even additional contraindications with an AZ Dx - even among those that are specifically indicated for dementia, depending on the type of dementia, and even the specific type of AZ.

Certainly. I was reluctant to try any steroid at all, given how Prednisone affects him now. But he was so miserable (hospice overnight on call had actually given up on him making it through the last flare up- we couldn’t even seem to keep him comfortable) and it was a matter of “what have we got to lose” at this late stage.

Surprisingly, and thank goodness, he can tolerate it AND it worked for him - quickly and completely.
I have no idea if it would be appropriate for your LO’s symptoms but is worth asking your Dr about Dexamethasone 2mg tab (generic Decadron). DH takes it 1x a day along with 1 Omeprazole 20mg capsule (generic Prilosec) to prevent any GI upset from the steroid.

I wish we had known about this med years ago, to use during his annual severe seasonal asthma exacerbation. But better late than never. And his docs have no concern about taking it for as long as it benefits him (controlling symptoms) at this point. Stage 7 -so whatever makes him comfortable short term is a priority. Hospice Dr suggested this and I’m so glad they did.

@M1 I agree that it does not sound like poison ivy at this point. I will be calling his dermatologist and neurologist tomorrow (Monday) morning, first thing. We ended up this evening (Sunday) at the urgent doc connected to our family practice due to a fast-moving new breakout. We've been racking our brains for anything different in his diet, meds, or exposure and came up with nothing. Not trying to be a Google Doc, but I just came across information from Mayo Clinic a few moments ago indicating that prolonged use of steroids can cause shingles. Since May 1st, he has had two steroid shots, cortisone cream & gel, 2 10mg steroid packs, one after the other, then a 20-mg steroid pack. We have had a very interesting mental health month, to say the least. I will own that. I was listening to the three different doctors I was reporting his meds to, telling me that it wasn't too much. I know better now.

Based on the pattern, formation, progression, and some other symptoms he's been having for a few days, including fever/chills, sensitivity to touch, aching, and increased blood pressure, I'm curious if it could be shingles. He is itching but not complaining of shooting pain, so I don't know. At the moment, almost any possibility is more thoughtful than the urgent care PA who immediately told him to take Benadryl and dismissed it as poison ivy without listening further, the moment my husband told him he has been being treated for that.

@Iris L. Thank you for so much helpful information. Always learning…

We are still so new in this journey. The lack of communication is on me. I have accompanied him to every doctor appointment since January, but I'm still working full-time, and it was "only" the dermatologist, so I sent his meds list with him, but he didn't give it to the doctor and didn't tell them of his AD Dx. So lesson learned on that.

He has taken prednisone in the past with no ill effect, and I do believe the first breakouts were poison-ivy due to the circumstances, but this rash onset, appearance, and behavior are different than the first breakout. I've notified his neurologist (who is now acting as his PCP and meds coordinator) of the rash and asked for an appointment if she believes warranted. Also will not implement new meds of any kind from the dermatologist unless cleared by the neurologist.

He has had some med intolerances in the past. It just seems that they might be escalating in severity and multiplying in number. He also seems to be beginning to experience some foods intolerance, which has never been an issue for him. This weekend, he mentioned out of the blue that last week, he ate strawberries, and the insides of his mouth broke out. I wonder if we should try to see an allergist/immunologist, or if it's just one more doctor to add to the retinue? Waiting to hear from his neurologist on that.

by the way, my husband was also resistant to support groups. It didn’t help me pushing him, he eventually went to one in his own time.
Do you work? I get great joy from my work.

Agree with everything said above. I doubt a dermatologist will biopsy him while he’s on steroids, as they may affect the pathology results. I would really consider asking his PCP if he needs a taper off the steroids and then to be assumed to have secondary adrenal insufficiency as a consequence of those steroids. It can take at least 3 months off steroids (depending on the steroid dose) for your adrenal glands to return to normal function. In the meantime, he would need special adrenal stress hormone replacement (pills or occasionally shots) during times of illness or injury. I’m saying this as a pediatrician whose child has secondary adrenal insufficiency from chronic steroid use for kidney disease. I was amazed by how short a duration of steroids it takes to develop. I hope this helps.