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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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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