Husband recently diagnosed
Comments
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Welcome to the forum Hope, though sorry you are going through this. You are both so young.
If you look to the right under "Quick Links" and Groups, there is a group for new members that has a lot of links to frequently cited materials—staging tools, quick reads like "understanding the dementia experience," etc. Early advice always, always includes legal and financial planning as soon as possible: you need to hold his powers of attorney, and someone besides him needs to hold yours. You need to plan for his future care without bankrupting yourself. A certified elder law attorney can help with all of this, and you can find them listed by location at nelf.org. If he is still working (and driving), you may want to read a lot of threads about applying for short and long-term disability. Also: read about anosognosia; he's probably not in denial, he probably really can't realize that he has progressive deficits. Driving is a hot-button issue for almost everyone.
With early diagnosis, he may be a candidate for one of the newer medications. We don't have many members that have done this yet, but it's coming.
this forum can be a true lifeline. If you read a lot of threads, you will learn tons of practical tips and workarounds, and you will have emotional support. This is a crushing illness for all involved. I wish you well.
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I was 49 when DH was diagnosed. It's been three years and I'm still trying to accept that my 50s will be a time of caregiving. Progress has been made, but I'm not fully there yet.
He may not want to talk about it or go to a support group but you need to. I have a therapist, in person support groups, and this forum. I have learned so much from all of these sources.
You will probably get a lot of advice that boils down to "get thee to a lawyer!" Preferably one that is certified in elder law (CELA). Go by yourself at first if you have to, but go. There are a lot of moving part to consider and planning for incapacity. Also get a plan B in place in case something happens and you can not provide care.
I'm so sorry you are in this position too. It's a lot, and will take time to adjust to. I burst into tears when anyone asked how I was doing for at least a year. It's grief, it's real, it's for him, it's for you.
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thank you both for the replies. My husband has had to stop working and driving. He is currently on Aricept. The doctor said he felt like that was the best med for him. I definitely have to get the legal process started.. I have been dragging my feet on that matter. Still in a bit of denial myself some days.
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You need to get your paperwork done while your DH is still capable of signing documents. This is very, very important.
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Hello and welcome. Not quite as young as you (I'm 54, husband with dementia is 65), but I absolutely get how you must feel blindsided. I agree with all the advice you've received above.
I'm going to share my mantra with you: he's not giving you a hard time, he's having a hard time. That is how I get through the day. I struggle with it sometimes, but it's the best I can do.
Your husband isn't in denial. He has something called anosognosia, which basically means that he cannot see his own impairment. It's part of the disease for many people with dementia. You'll learn to work around this.
So, my advice is to prioritize as you take each step to get through this. Medical stuff first (sounds like you're on this path, having already gotten a diagnosis). Legal/financial next. And see if you can find a support group. The people on this forum have literally and figuratively saved my life. They're kind, helpful, and more knowledgeable than most medical professionals because they live with it every day. Ask questions, vent, and join the conversation. I'm sorry you need us, but I'm glad you found us.
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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.
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There's a thread "Advice for Younger Caregivers" that has great suggestions especially from Army Vet. Don't wait for you and your DH to waste away!
Iris
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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.
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Welcome Stauffer! There are two message boards for PWDs (persons with dementia). At the opening page, look for "Discussions for people living with dementia" and click. There is a board for younger onset under age 65, you can post there. I'll be looking for you!
Iris
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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?
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It seems that there is a manic component to your H’s behaviors. Is the psych sure this is just Alz? A more typical behavior would be a lessening of interest in activities + not taking on lots of new projects. If others have seen this, I hope they chime in. This must be putting a tremendous amount of presser on you.
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@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.
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@terei, thank you for that, as it does help me continue to clarify my own mind. I don't think I'm seeing a true BH manic behavior, but I DO believe there is a fair amount of influence from prednisone, which he has been taking almost continuously since the first week of May, for a case of poison ivy that we just couldn't get under control. Thankfully, that is finally abating, and he only has one more week of prednisone, but I will keep that in mind, because there is some mental health family history in an aunt and grandmother of his. Thank you!
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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.
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@ButterflyWings, thank you. What you describe in your husband is feeling very familiar to me at the moment. My husband is engaging in multiple large projects at one time - construction, demolition, landscaping, remodeling - and he enjoys them all, but I do not see that his current pace is sustainable. I also know my husband well enough to know that asking him to slow down will only drive him to work harder and faster. I have always had high energy, myself, and I have been wondering what's wrong with me, that I just don't seem to be able keep up with him right now.
I do feel some concern about the first time he mis-wires or miscalculates or mis-steps. These tasks are innate knowledge inside him, unlike finances, meds management, doctor/insurance coordination - all the things I now manage for us both - but I believe we are not a long distance from those first "mis"haps. Right now, I try not to anticipate them, but rather just know that we know professionals who can step in, and I think he will let them. There are some days when his plans are more grandiose than his actual actions, and I'm learning to just validate and listen to him. That seems to be as important to him as anything. But as you said, I do sometimes fall short when I react emotionally rather than intentionally.
After some struggles and bad starts with other meds, he's been taking Lexapro for mood and Pamiprexole for tremors/night terrors/kicking/thrashing since April, and he just started Namenda. His anxiety and night movement seem to be pretty well controlled at the moment.
Thank you for validating for me that I'm not just imagining all the things I'm experiencing and for the information for further reading. And thank you for the links and further reading. I'm drinking from the hydrant, but I don't mind.
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Watch him around power tools and electricity. PWDs become unaware of safety hazards.
Iris
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we are in a similar spot. I am 54 DH is 60. At this point they are calling it MCI he is atypical for both EOA and FTD but the drs are pretty confident it is 1 or the other. DH is still independent. I handle the food, money and meds. We have legal stuff in place. For the most part I try to function as normally as possible. There are times when something will smack me into reality and remind me of the journey we are on. So far his decline has been slow and steady however we have been told that doesn’t mean it will stay that way. He has been on aricept for 3 years now. I am not sure it is doing anything anymore but he feels better having it.
The hardest part for me so far has been knowing I am losing my partner of the past 36 years and knowing the time will come when I will be alone. One day at a time!
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If you have dreams/goals such as travel, do it while you still can.
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For whomever is on prednisone: the prescription of prednisone is usually for short-term use, 5-7 days, for an acute inflammation. If a steroid is needed for longer use, this is possible with the lowest doage possible, due to the serious side effects from steroids. It is a good idea to discuss side effects with the prescribing physician or seek a second opinion.
Iris
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@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.
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@ButterflyWings Would you mind sharing the name of the substitute? Just so I know it - if that's allowed? Not asking for medical advice. We have had a pretty rough month with the steroids, and as of this afternoon, my sweet husband seems to either be having a 4th recurrence of poison ivy in 6 weeks, or has possibly developed shingles. I just have no idea, but the one thing I do know is NO more steroids.
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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.
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Makking, this does not sound like poison ivy. Has your husband seen a dermatologist and had a skin biopsy?
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@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.
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Here is a bit of a medical analogy that may help. Everyone is aware that taking opiates for pain for too long may result in addiction to opiates. Well, the situation is somewhat similar for steroids although different. Our bodies naturally produce steroids. When we take steroids as a medication, oral, injected or even topically, our naturally production of steroids can be suppressed. When the prescribed steroids are stopped, our bodies may not resume producing steroids. Then the patient will need to get on steroids indefinitely, until he can be weaned off. This is a serious medical complication! Usually the steroid dosage is weaned down to avoid a sudden cut-off. Also, we try to limit steroids to less than two weeks. But, depending upon the medical condition, high doses may be needed for a long time. Every medication must be prescribed after consideration of the need for the drug versus the side effects and complications.
Another point to consider is that prolonged use of steroids may make the patient more susceptible to infections. For example, a recurrence of shingles.
All of this needs to be discussed with the prescribing physician. The patient needs to be monitored closely, since there are several aspects to consider in this medically frail patient.
Dexamethasone is a steroid, in the same classification as prednisone.
Steroid use does affect cognition and mental health.
Makking, if your DH has a diagnosis of dementia, he is not a reliable reporter of his health history. He should not be alone with the physician's assistant. Why was he given steroids in the first place? Was that for poison ivy? Did he really have poison ivy?
Iris
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@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.
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Hi Hope. I just saw your comment. I am 49 and my husband is 58, he was diagnosed with Alzheimer’s in feb 2023. The six months up to diagnosis and six months after were the greatest emotional rollercoaster for me so far.
Luckily he is quite stable and the medication combined with him not working really reduces his symptoms.
I speak to a counsellor which helps. My husband speaks to one too occasionally.
We have 2 teenagers still at home and I work full time.
Anyway, I just wanted to say hi.2 -
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.0 -
Making, a few more general comments:
You mention that he has been spinning faster and faster in his activity level, being hyperactivity. Steroid use can make a person "go crazy", to use the vernacular. Even patient on short tern steroid use can notice a change in mentality and behaviors hopefully a temporary change.
You mention thst he alternates between anosognosia and denial. It is important for you to understand that anosognosia is not denial. Anosognosia is a characteristic of dementia causing the patient to be unaware of having dementia. Anosognosia is caused by the brain damage. Naturally he will deny problems, because to him, he is fine, he doesn't know what you are talking about. It is better to avoid talking about dementia to him. Learn the work-arounds that the members talk about.
He tolerated prednisone in the past. Perhaps it was short term use. Also, what was tolerated at age 40 may be less tolerated at age 60. (I don't know what his age is.) All older adults metabolize drugs at a slower rate than when we were middle aged. So age needs to be taken into account.
There is a concept called polypharmacy. This means that older adults are on many medications for various conditions, and the medications may interact with each other and cause unexpected side effects. Doctors for older adults have to be aware of this, and work to limit the number of drugs an older adult is on. Avoid adding a new medication to treat a side effect of a primary drug. Also consider over-the-counter medications, they interact and cause side effects also.
Food allergies can pop up at any time. Although, since he has been on steroids for quite some time, his immune system is probably not responding normally. I would avoid the most likely allergenic foods until his body has had a chance to recover from the steroid use. Discuss with the prescribing doctor.
There Is a staging system that equivalates stage to a child's developmental age. Your DH may be functioning at a ten-twelve year old level. He may speak well, but he is unreliable and possibly unsafe alone. Watch him around power tools. Read about driving. All of this is new and disturbing, but this is what dealing with dementia means. Was he thoroughly evaluated to exclude dementia mimics? Medication side effects can cause abnormal cognition.
Iris
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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.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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