Newly diagnosed DH with early onset Alzeheimers
My DH was diagnosed with early onset ALZ November 2023 at the age of 62. We are doing a trial drug through Lily in Plymouth Meeting, PA. He'll have been in the trial for over 15 months as of Feb 2025. I am wondering what early symptoms I should look out for. He has a bad short term memory, finds it difficult to find words in conversation and looses (misplaces) common things like keys and phone. Anyone already gone through the early stages? If so, what can I expect?
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I think everyone has a different experience, but there are alot of similarities. My HWD was diagnosed about a year ago. His symptoms started with trouble recalling names of people we know, actors, places, etc. It has become progressively worse…now he can't watch tv, except for sports, because he can't follow a plot or the characters in a show, plus he can't use the remotes at all. He asks the same questions over and over and we can spend hours coming up with a solution to a problem and just have to start all over again the next day, or sooner. He has no conception of time, and asks repeatedly what day it is, what month it is, thinks things that cost 5,000 costs 100,000 or even a million, can't read a clock, etc. It is best not to tell him about anything until right before as he frets and frets and makes things so complicated that they can hardly be accomplished. He is agitated and angry most of the time, shadows me relentlessly, loses keys and other items, have to show him how to turn on/off his cellphone every day. He has trouble pumping gas and using his credit card at the pump. Be prepared to pick up after him like a child…leaves dishes, food, clothes everywhere and my house is a total wreck. He talks nonstop and it is exhausting by the end of the day. He can still do some things though…can still take his medications although I have to remind him, checks the oil and batteries in the car, charges the golf cart, waters the plants. I am thankful that he is still continent, although I know that day is coming. The hardest thing for me was to realize that he is not the partner that I once had, but once I accepted that my expectations were lowered and it is much easier. Hope you have some good results with your trial…let us know!
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I’d look into the Tam Cummings assessment tool. It sounds like your DH is more into stage 4/5.
https://www.tamcummings.com/tools
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Ditto to Bailey’s Mom except the last time my DH filled the car he put diesel in the petrol tank caused a major drama. Can’t use the remote or phone, read a clock, follow a story line, or understand money so can’t pay any bills or do the shopping, can’t use any of his battery operated tools in the shed. He gave me really good instructions while on the job before he was this far advanced. He’s still continent thank goodness but I assist with his shaving and we often shower together (once upon a time this might have been romantic now just rather sad) Suggestion learn as much as you can about the running of the house, operating the tools, HWS and house heating and cooling systems servicing the car etc before he advances any further because sooner or later you find you are on your own. Good luck keep posting.
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So sorry about your DH’s diagnosis. I am attaching a chart that may help. Not everyone exhibits all the behaviors in each stage. The behaviors can overlap or present later. I kept this chart handy and kept a list of my DH’s behaviors that I sent to his doctors monthly or as they happened. I did not let my DH see the list. It helped me communicate with the doctors. If you haven’t done so, read the book “ The 36 Hour Day” and watch Tam Cummings videos.
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Thank you for all that advice and information. It has now been nearly 3 years since his diagnosis. His moods are so unpredictable. He is not mean or violent, but he becomes quiet and distant and completely ignores me even when I am sitting in the same room with him. He is in Stage 5 according to his last doctor evaluation. He has medicine to help with Sundowning but I don't think it really helps very much. He usually heads to bed around 7pm every night. I am living with a stranger and it's so very lonely. Does anyone else have these "Jeckle and Hyde" mood swings? He can be talking to our dog like a 7 year old one moment and the next get angry at me for putting a cup on the table without a coaster. I am weary. 42 years of marriage and this is the challenge of a lifetime. I visited a Memory Care facility and it was too much for me to experience. People sitting around staring into space and rooms with no personality. When do I know when to bring my DH to a place like that? I really don't want to but this 24/7 care giving is making me feel awful. I am his "person" and he is lost when I am not with him. He is still able to take care of himself and make himself a microwave meal. He never uses the stove/oven or grill - he doesn't know how to. I hate to ask my grown kids for help because they are so busy raising their own kids and I don't want to put that burden on them.
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Not all memory care facilities are the same. I’d encourage you to look @ a few more. Hopefully you can find one young would be satisfied with. I did not like the first place I visited either so I just stopped looking. But now I’ve found one that would be good (I think) but the application is lengthy so I’ve stepped back again. None of this is easy.
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Biggles just a side note. All the things you listed are the types of things I wish I had been told to learn about. I needed all the advice about lawyers, wills, DPOAs, finances, assessment tools and doctors and I am so grateful for that advice. BUT the everyday learning about those things my DW always managed are the ones that have been some of my biggest lessons; learning it all the hard way. Recently DW filled the lawn mower with oil. So the small engine repair man is my new friend so far a pole saw, 3 chain saws and now the lawn mower. And can I just vent for moment on how complicated it has been to learn about irrigating with a pump and head gates and all the different types of irrigation zones and systems. I never truly appreciated how much she took care of until it was all on me. 😜 And now its too late to learn from her so just adding to the complications.
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Welcome. I am sorry for your husband’s diagnosis. Executive function and short term memory seem to be impacted in early stages the most. They can’t keep track of when to pay bills or remember if the bill has been paid. Verify that what you are being told is true. Their reality is not yours. Their brains are broken. Items are constantly misplaced, and they can’t retrace their steps to figure out where the item was left. They can’t retrace or remember information for short term retrieval. They will ask you the same question- all day and all night- even though you have answered it 1,000 times. A daily calendar and whiteboard that lists the events for the day or To Do List is helpful. They can no longer multitask. Things that used to be easy are difficult and cause anxiety and anger. Keep things simple. Keep daily routines and schedules. Don’t argue with him. Take blame and apologize for what you never did. They can get confused and not remember where a common place is located or how to get there. Put TILE gps trackers on keys, wallet, phone. It tracks the item and person. Buy the book The 36 Hour Day. It is excellent and will help you prepare for what is coming. Come back here for help and support.
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If you think he is stage 5, I would say that is mid sage vs early stage. But that really doesn’t matter. My mom has vascular dementia, so her memory has been less effected than many here. These are some of the things I have noticed that are not necessarily on dbat. Extremely poor judgment, inability to plan and organize, problems doing things she has done for years (sewing), problems learning new things, short attention span, very picky about food, anxiety, depression, hoarding, unsteady on her feet, mixed up logic (believes if she can push her walker she can push a lawnmower to mow her lawn), lack of empathy, anger, mild paranoia/ lack of trust, problems with numbers and finances, demanding, and lastly anosognosia. She does not recognize any of her limitations or symptoms. This has been the worst. She doesn’t understand why she can’t live in her home alone, wants me to bring her her sewing machine so she can finish a quilt, wants to go to her house so she can pull weeds in her garden, doesn’t want anyone to touch anything in her house (hasn’t lived there in 3 1/2 years), gets upset when reminded to use her cane, thinks she is perfectly capable of managing her finances and all health matters, believes she is perfectly capable of making any and all decisions for herself, and is resentful of any limitations put on her to keep her safe. I wish I had known about anosognosia in the very beginning.
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When is the right time to place a LO into a MC facility? It’s going to be different for everyone but I will tell you my experience. My DW with EOAD is 57 and was diagnosed in 2023. She is solidly into stage 6. I have to help her with medications, showering, brushing teeth, dressing and going to the bathroom. In June I realized that I wasn’t giving her the care that she would get from a MC facility. Along with all the things I mentioned in caring for her, she also just sat in her chair watching TV all day. She lost all interest in games, taking walks and socializing. After I took care of all the daily chores of taking care of the house, I would just sit there with her bored out of my mind. I woke up last month realizing that it was time to place my DW into MC.I visited several places and yes they are depressing, even the nicer ones. I chose one and placed my DW about 3 weeks ago. When I visit her, she seems happy and has several friends that she has made. She participates in the group functions. This is way more than she did at our home. As for me, I have finally been able to sleep through the night for the first time in over a year. Am I sad, yes but I am able to be her husband again and not her caregiver. Even though or LO,s are all different in their journey, I feel we all know when that right time hits us.
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Some of the most difficult parts for me on this journey is that 1.) my DH can be so very mean to me one day and the next day he has no recollection of his bad behavior. 2.) He is stressed when the grandkids come over and ignores them. 3.)He doesn't realize that his EOA is never going to go away and tells me all the time that he is fine. 4.) He threatens to 'buy a car' when he feels like he's trapped in the house - he has not driven in a year. His 'depth perception' was awful and he is constantly squinting his left eye. We had his eyes checked and they are healthy. But, this has become a regular 'tick' and I jokingly call him a pirate. He has no idea he's doing it either. 5.) His Sundowning is bad - he wanders, paces, shuffles things around and gets agitated easily. Our doctor put him on Zanex but that did not help, so he tried Trazadone and that made his agitation worse. So currently he is not on any medication at all except a THC Gummies to help him sleep soundly. If he forgets to take this gummy before bed, he twitches all night and snores. I have become accustomed to reminding him to take it every night. 6.) On occasion he'll announce to me that he's "sleeping in the guest room tonight" because I've said something to upset him. The next day, he has no recollection of why he was sleeping in the guest room. 7.) His doctor told him not to use power tools anymore but he was out with the chainsaw yesterday and today he was using the table saw. He doesn't listen to me when I tell him he may cut of a body part either. I may have to give those tools away to my son soon. If he harms himself, I will feel like it was my fault. He sees his doctor every 3 months for a check up but I think he now has Aphasia so should I make an earlier visit? What can be done after all? Thank you for letting me vent to you who are caregivers. It's a living hell not knowing what tomorrow will bring. Will I wake up to my DH in a good mood (rare) or a quiet/sullen/angry mood. And, by the way, 8.) he's nicer to our dog then he is to me.
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The description of your day sounds exactly like my days. Bored out of my mind sometimes. I'm learning to appreciate that as compared to being P.O.ed ☺️
Sorry you are having to deal with this. I would definitely get your son to take the power tools. Power tools are a temptation no man can resist. If he asks for them, you can tell him Oh son just needed to borrow them for a couple days.
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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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