New here
Hi All,
I’m 59 and my DH is 63. He has just been diagnosed with Alzheimer’s/Dementia. He is moderate to severe. I knew something was wrong and tried to get him to seek help earlier, but he refused. He isn’t accepting the diagnosis, he just says he’s going to die. We have been married for 31 years and have had a wonderful life together. My heart breaks to see him slowly fading away. I feel like I’m taking a crash course in Alzheimer’s. Are there advocates available? Is that what a social worker does? He was just diagnosed less than 2 weeks ago, and our next appointment with his neurologist isn’t until July. Should I expect more information at that appointment about steps that I should be taking? I’m feeling a bit overwhelmed.
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Welcome to the place for info and support. Sorry about your husband’s diagnosis. Unfortunately doctors aren’t much help. I would make a list of questions for the Neurologist. There are infusions for EOAD if he qualifies but ask about side effects. The infusions may delay progression by a few months but caregivers have said they notice a difference in their LO. Your husband has Anosognosia which is a neurological condition causing a person to be unaware of or unable to recognize their own mental or physical health conditions, such as Alzheimer's. It is a physical "lack of insight" caused by brain damage (often in the frontal/parietal lobes), not a psychological defense mechanism or intentional denial. Start by seeing an elder care attorney and get paperwork in order. DPOA, medical POA, HIPPA, wills, etc. don’t delay. Tell him it’s because you’re both getting older. Don’t mention Alzheimer’s. Unless he brings it up I wouldn’t talk about his diagnosis. It will only cause him anxiety. Just assure him you will be there for him. I will attach a staging tool to help you see where he is and the type of care he will need. One thing that helped me after my DH diagnosis was the book “The 36 Hour Day” which was recommended by a nurse. Also search online for dementia caregiving videos by Tam Cummings or Teepa Snow. They are very helpful. You won’t find better support than this online community of caregivers. We understand how you feel. We’re here for you. You are not alone. Hugs. 💜
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So sorry that you find yourself here but this is the best place I found to get good, experience based and honest information. Come here often, any time you need to. Ask anything. Vent whenever you want. Cry when you need. People here will be there for you at any hour and they will give you the best information available, the pros and cons. Talk to the doctors but do not be surprised if you leave dissatisfied. There are many good doctors but this disease is basically beyond anything they can to do help and many are less informed about the realities than should be. Come here and check what you see, hear or are told. Be aware that often family and friends, while meaning well, are very poorly educated about this disease and have very poor assumptions about it and how to deal with it. Encourage close family to come here and ask their questions before dumping them on you to be sure they are helpful. Tell them to come here and get educated first then they can truly be helpful. I support reading all you can but my caution is that no two persons travel the path of this disease exactly alike so be cautious about taking what you read and trying to apply it exactly to your loved one and then becoming even more confused and distraught. Lastly, as Diane above has said (and she is one great resource on here) become informed about anosognosia and showboating. Showboating is when your loved one can muster enough strength to act pretty normal or at least far less advanced in the disease than true in the presence of visitors. This leaves family and friends who visit the depart thinking you are exaggerating the condition and it is not as bad as reported. Anosognosia promotes showboating to hide the disease since the loved one rejects the diagnosis anyway. Sorry you have to be here but come often and anytime.
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You have been given great advice. A pwd often has a very firm set belief/reality (along with the anosognosia). They may for some reason believe Elvis is alive, that a son stole something, or that he needs to go to work. Trying to convince a person with dementia these things are not true can cause big problems. Even with evidence and physical proof they may not accept reality. As things progress, it’s best to avoid trying to reason with him or convince him. This usually leads to an argument that you will lose. Don’t underestimate anosognosia. It sounds like a very minor symptom. It’s not! Keep in mind facilities can have a waiting list to get in. He doesn’t need it now, but it’s always good to have a plan B. You never know what else life might throw at you. Getting legal matters taken care of is very important at this point. I will just add a few links that may be helpful.
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Thank you all so very much for your support, insight, and information! I truly value and appreciate it!
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It is so horribly overwhelming. My DH has VD and Aphasia. I spent all of 2024 crying, I was a super mess I didn't know where to turn to or who to turn to. Nobody seemed to understand the depth of despair that I felt, not even the condescending Dimentia Association, and then I was abandoned by friends and even some family.
My lifesaver that year were my bags, I make fashion Boho handbags and have a small outlet and for that year particularly I buried myself behind my sewing machine while DH wandered around the house or slept on the sofa next to me. At the same time between sewing I cried, and wrote poems about how I felt and the love of my life. That was the best thing I have done I didn't realise it at the time, but my deepest thoughts were captured in those short poems. I have since typeset and had my 80 poems printed. It is my personal journey no one else has seen it, when I read it now I reflect and cry. I don't think I will ever come to terms with this horrible disease but I can now get through a conversation without going to pieces. Come here often with your thoughts also I suggest you look up on this site The Cavalry’s Not Coming written by Bill2001. Sending hugs and care.
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I am sorry you are here with this diagnosis. You have been given excellent advice. I have some suggestions to add to your comments so far. Put TILE trackers on phones, wallet, keys. It tracks the person and item. Your husband should no longer drive. With this diagnosis, driving is impacted with spacial orientation and focus with reaction time. Your insurance company will not cover an accident. You can get sued for everything you own. Apply for SSDI for your husband. Find an attorney who specializes in this to help you. Look into in home care agencies. If there is an Oasis Senior Services in your area, they will help you. Free service. Tour memory care facilities and put him on a waitlist with a refundable deposit. This is your plan b if you can no longer care for him. Oasis can help with this as well. Call your local Council for the Aging and ask what services are available including adult day care. Get a geriatric psychiatrist on your husband’s medical care team. They will assist if he needs medication at any point. Many do. Your local police or sheriff’s officer has Project Lifesaver Programs that offer gps tracking watches. They can track anywhere in the U.S. People will Alzheimer’s can wander off and get lost. If there is a Mayo Clinic near you, get a referral for the Habit Program. They will educate you and your husband on this disease and give you tools to handle what is coming. They will train both of you in Brain HQ, an online game program that will build new neurons in the undamaged part of his brain. They offer online and in person support groups. Look into Dr. Dean Ornish’s Lifestyle Program. He has clinical trials that have slowed up the progression of Alzheimer’s and restored cognitive function in patients. Eat a plant based diet. No processed foods. Eat foods that break through the brain blood barrier. You can find the list online. Keep notes from all doctors appointments and other providers in one notebook. Keep notes on new symptoms to share privately with doctors. Don’t discuss in front of your husband. He will never accept this diagnosis. You will have to take over all finances. Get the names of all accounts along with log in and passwords. Do the same for banks, brokerage accounts, computer, phone. Do not assume the information he tells you is true. Verify that bills have been paid. Get text messages or emails when bills are paid, anything is charged, money is withdrawn. He is a target for scams and hackers. Travel as much as you can now. See family and friends. Come back here for help and support. The people here are extremely knowledgeable and supportive.
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@PalmReader Im sorry about your husband’s diagnosis but glad you found this community.
Others have given you great info. My husband was just diagnosed last August with moderate ALZ. I was overwhelmed thinking about everything I needed to do, the loss of our future plans, I was also angry, depressed, scared, anxious, you name it. It helped me to slow myself down and prioritize what had to get done vs what I wanted to do. I used to be able to manage my emotions through diet and exercise but a couple of months ago I asked my doctor for help. Taking a low dose SSRI has made a huge improvement.
We may not be there with you in person, but we’re here with and for you.2 -
I agree with all of the above suggestions, though reading all of them together can add to your feelings of being overwhelmed. Take it a step or two at a time, because you will have more time than you would like along this journey.
Educating yourself about the disease will help decrease some of the helplessness you may be feeling.
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Welcome palmreader.
You have entered dementia 101…not subject anyone signs up for but that, now, is beside the point.
Please google alz.org and read everything! Then google everything you do not understand there. Then come here for the info and support you are not going to find elsewhere.
You will be the most important element in your husbands care for the remainder of his life. The more you know the easier the journey is going to be.
The kind of bond you had over the past years with your husband is going to change but there will still be a deep bond that develops if you let it.
Please know that we care about you and want to share with you what has been shared with us. We are also here to just listen.
Keep us in the loop!!!!!!
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Thank you!
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Thank you!
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You are a very talented person Biggles. A woman in my community self published her book of poems she had written for herself through the early to mid stages of her husbands disease. When I heard about it I went to our local library and checked it out. The first poem in her book made me cry. It was everything I had felt. Maybe one day your poems can help ease the mind of another person experiencing what you have. It’s always nice to know we aren’t alone in our feelings.
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Thank you trottingalong your kind words are gratefully received at the moment like so many of us I am just so tired and spent.
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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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