Just Starting This Journey
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welcome. Sorry about your husband’s diagnosis. Some steps to take now: meet with an attorney and get legal affairs in order. Tell him it’s just because you’re getting older. DPOA, Medical POA, HIPPA forms, etc. read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Here’s the DBAT tool to really determine where your husband is cognitively. Come here often for info and support.
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I echo Diane's comment to come here early and often (and by the way, she is one of the most helpful and caring people on here). This will prove to be your best, most available and easiest place to get good information and tips on how to survive and to help your husband. It is THE PLACE to unload your frustrations, vent, cry, scream, etc. when needed. My wife was diagnosed with MCI first and it caused her to become very sensitive. She felt others knew of her diagnosis (very few did) and judged her causing her sweet personality to change. Read, watch videos and learn what you can, but these people on this site saved me and so many more going through this. So sorry you are here, but so glad you found us. I will offer that knowing where your husband is on the scale is helpful to indicate behaviors you might anticipate but each person is unique and may not follow the scale closely. Don't get caught up in trying to be too precise about identifying the exact position. Just use it as information but be prepared for many differences along the way.
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So sorry you need to be here @Dusty217
You are at the beginning of a very difficult journey. I wish I would have found this place earlier, you’re fortunate in that regard. I agree with @howhale , @SDianeL is very helpful and caring. Keep coming back, you’ll find that many of the things you will be dealing with have already been dealt with on this forum. Each journey is different, but we have many commonalities. Someone once posted, we’re all in the same storm, just different boats.
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Thank you, yes I have started the legal paperwork. Planning on looking into Medicaid Trust as well. I will read the book mentioned.
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Welcome to the forum. My DW is also in the early phase of this journey with a recent MCI diagnosis. I agree with all the good advice above that others have responded with. I would only add a caution about your DH driving. If he is driving and gets into an accident, even one he did not cause, he may not be covered by liability insurance due to the MCI diagnosis. The financial unintended consequences could be devastating. Getting my DW to not drive has been tough, an understandable loss of independence that I would hate if I were in her situation. Physical and financial safety of our LO is one of the most important responsibilities that we have as caregivers. Just start doing all the driving and hopefully like my DW your DH will get use to it and just start assuming you'll take them where they want to go. Adding an Uber or Lyft app to their phone may help as well. Best of luck to you in transitioning to your new reality.
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That is going to be the hardest change. I get what you are saying. The problem is he has not accepted the diagnosis as yet. We have a PET scan this week and follow up with Neuro at the end of the month. I think once he is told by a doctor that indeed he has Alzheimer's, and I'm sure that is what we're facing, he will accept the liability issue, at least while he still can understand this. This road is scary and I love this site already.
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I’m also glad you are here. We are all in different stages and those that are further along are very helpful for those just starting this journey. One thing that seems common is that our loved ones are always initially told MCI when in fact they are further along. By what you have stated I suspect your husband is in mid stage, so do review the stages of the disease, it does help. As far as driving, my insurance company told me they would not cover my husband if he were in an accident because he did have a diagnosis on his medical record. Driving equals independence and it is one of the hardest to deal with. It worked out fairly well for me overall. I started out by saying how about I drive us today. And if I was out and about I would ask if he wanted me to pick something up for him. I was a lucky one that my husband really didn’t care if he didn’t drive. Keep coming back.
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Due to a condition called anosogosia your husband may never accept his diagnosis. My husband is late stage 4 early 5 and does not believe there’s anything wrong with him. Here’s a bit of info explaining it:
Dementia Denial
“Anosognosia is not the denial of dementia, it is a true lack of awareness of the condition. There is a difference between denying the reality of a diagnosis and being unaware of the decline in cognitive skills. Think of denial as more of a conscious choice, whereas anosognosia is the lack of insight or ability to process the information that a person's cognition, memory and behaviors have changed.”
I’m sorry for your need to be here but glad you’ve found this wonderful, supportive community.
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Thank you, the issue with driving had not occurred to me and I will make this change. I do see a major difference in his driving. Nothing dangerous yet but as I said he gets aggravated much easier. This was never him. He was always over cautious, and I see that changing as well. I wonder if you are correct in thinking him further along than I suspect. He has had one episode of a delusion. He swore someone was knocking on our door in the middle of the night. We have a ring camera so I knew this didn't happen. Could have been a vivid dream but he became angry with me when I said it didn't happen. I know in the future I will have to find a better way to handle this but at this point I'm not thinking on my feet
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The "seeing people" not present, hearing people, strangers in the house, seeing a reflection in a window or mirror and believing someone is present are all possible behaviors you might experience. My DW became agitated and frightened when she saw a reflection of her or others in windows or mirrors or on the darkened tv screen. There is not explaining it away. I finally installed material on the sliding glass doors, windows and removed as many other reflective items as possible to help calm her. Sounds also get misunderstood ad cause reactions you cannot explain away. There were many times I just had to "investigate" to confirm no one was there. Folks here can offer tips for most any behavior you may experience so ask at anytime. Amongst the entire group, we have seen it all.
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Dusty…thinking on your feet is much more important than acceptance of. a diagnosis.
The "good" news is that it is almost certain that you are not going to run into a situation that is new so please know we are here to share what was shared with us.
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Welcome. I hope that is the case (that he accepts his diagnosis and willingly stops driving). Logic and reasoning can be difficult for a person with dementia. While my mom even went so far as to say “ I told you something was wrong” when diagnosed, when it came down to giving up her independence she believed she was in the very very early stages (she was mid stage) and refused to cooperate with restrictions. After just a year she told me the doctor made a mistake and didn’t know what they were talking about. I will add a link about anosognosia. It’s awful!
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Thank you, I just read the attached and will keep it in mind.
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@Dusty217 Sorry to hear that your loved one is dealing with dementia. My father-in-law, who recently passed after a battle with dementia, never accepted or understood his diagnosis - and was also resistant to giving up abilities such as driving. Unfortunately, trying to be honest/reason with him wasn't an option - as it simply caused more frequent and severe bouts of agitation. We hated what ended up working for us - white lies and misdirection. We asked him to let us drive so that he could listen for any noises coming from the car (his short term memory loss was such that he wouldn't remember we did this every time we drove him somewhere.) He had other long-term medical issues like a bad shoulder/back, which he did not forget about with dementia, and if we needed a new/different reason that he couldn't drive we would mention those (ex. "it might aggravate your bad shoulder"). We hated being dishonest with him, but it was absolutely the only thing that worked. What we learned through communities like this and friends/family that had dealt with dementia was that there aren't any "rules" with handling dementia. We as caregivers work within THEIR world/reality, and often have to use whatever concepts or reasoning that they can tolerate/relate to (that achieve the end results we need to happen for their safety and care.) Once we came to realize that, and come to terms with using creative ways to get him to accept what we needed him to, life became MUCH easier for us and him. This was just our experience - your results may vary. God bless you and your loved one on this journey.4
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Thank you. It is a journey that I have just begun. This site is already my new lifeline.
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The little lies we tell, the mis-directing, the deflecting, etc. are all the thing we learn to do. But, always remember that, as their care giver and one who loves them, the things we do are FOR them, not TO them. As long we keep that firmly in our mind, we use whatever works to protect our loved one and give them as good and safe a life as possible.
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Welcome. I highly recommend that along with the testing you have had done that you have a brain MRI and blood test for Alzheimer’s. Another thing we learned is that not all neuropsychological testing is the same as some tests are more difficult and access more information. My husband was diagnosed with MCI with a strong suspicion that Alzheimer’s was causing it. The testing refuted this. We have now reversed his MCI. Get as much testing as possible to get an accurate diagnosis. Come back here for support and help.
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We had an MRI, it showed normal shrinkage for his age. Bloodwork called P217 Tau that is a marker for Amyloid/Alzheimer's was positive. He also had DNA testing showing he carries one of the DNA markers for Alzheimer's. None of this is absolute but PET scan completed today should give us the final piece of the puzzle. I really really hope I'm wrong, but I don't think it's likely. Thank you for all the good suggestions. I hope your husband continues to do well.
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Be careful when discussing his diagnosis with him. There’s a very real possibility that he will become agitated upon hearing it, won’t be able to understand what it means, or won’t remember that he was even told a diagnosis. Most of us resorted to just mentioning ‘memory issues that come with age’. Even though dementia involves so much more than just memory issues.
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Thank you. I wish you both all of the best. Come back here for support and assistance.
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The phenomena of anosognosia is real and common and can impact life with the loved one in so many ways. I look back and continue to be surprised at the lack of input regarding this from any of the doctors. Even as the neurologist saw it during her visits, it was never mentioned or explained. It is only because of this forum that I came to understand it and its' complexity. It caused several years of great difficulty with my dear wife and was very hard to deal with. There is no arguing, explaining, rationalizing, etc., that will resolve it for the loved one, at least not for us. In time it began to diminish but that followed her general decline in health and capabilities.
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This is the first time I have seen this explanation of anosognosia. My DH knows he has AL but fails to see that he may not make good financial decisions. I am fortunate that he has never been a shopper and can't get on Amazon. After we nearly got scammed of $30000 due to his computer naivite he allowed me to take over all financial matters, but he still thinks that the finances are hi purview.
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The anosognosia can persist throughout the disease in my experience. All that ended the rejection of the diagnosis was my wife's disease progression to the point where it did not matter. Be prepared to live with it in varying forms and changing forms throughout. Ask your questions here as you experience another change, someone has already experienced it and will suggest help. My wife was never violent or and was not too difficult as long as I accepted that she believed she was okay and was not ill. Had I known about the anosognosia sooner, it would have prevented some of the early challenges. It was never her, just my ignorance of how this disease evolves and this site made a difference once found.
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Thank you this is very clear and easier to understand. I sometimes think I have anosognosia. Really, I just wish I did. We are so early in the diagnosis my DH has days were everything seems normal. Remembers what I told him and is on point. Then he will have a day that I tell him the same thing 4 or more times. I'm a nurse and I know this is a normal pattern, but the good days always make me forget just a little. My biggest fear is when he starts losing memory that is older the last 10 years and I know that will go before the older years. We only met 13 years ago, and he will forget me sooner than say his ex-wife. I think that's why I want to slow this down. I know the treatment is only a temporary slowdown, but I do want a few more years if I can.
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That is a heartbreaking situation knowing him only 13 years and knowing the recent memories fade first. Just another nightmare aspect of this horrible disease and hope treatments slow the progress a lot and gives you the time you are seeking. just makes the message to all to not waste time and build memories more important as we never know what tomorrow brings. All the best to you as you walk this path with your husband.
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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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