My husband, age 63, during the past year has begun to have behavior that appears to be dementia. He has difficulty remembering people in the community that he has known for 30 years. He forgets events that have happened recently, and more and more as we go into town he comments that he has never been on "this road before". Actually he has traved a great deal on the road. This happens with many streets and/or roads. When I mention a specific event he comments that he never knew about it. He will go on an errand and call me asking directions to a place he has been many times. At least once a week he comments that everything looks so strange. He has always been very social and invoved in conversations, and within the last 6 months sits away from a group of people and doesn't join in the conversation. Within the last two weeks I have noticed that when he is sitting with his legs crossed he shakes his foot and is "pill rolling" with one hand. He attended a community meeting last week and then 4 days later he commented that he forgot to attend the meeting. When I told him he had attended, he still did not remember. He continues to be aware of who the president is and what date it is. When I mentioned to him recently that we needed to schedule an appointment so that he could be evaluated to see if any medicine might help his memory. He looked at me as if I must be imagining he had memory difficulties and said that he didn't need to see a doctor. Any suggestions on how to get a loved one to consent to an evaluation.
srsteen, You will find many here who will provide advice based on our own personal experience. When I first started to notice things not right with my DH I first took him to the eye doctor as that was the first real clue. Nothing wrong there. He is on a Cpap machine and thought maybe that was the problem and the machine, it needed adjusting but that didn't change things. Next was the neurologist. He ordered several blood tests ( all the ones that rule out possible causes for memory problems) and they were all negative. He did not do well on the memory test and has since had the neuro psych test which gave the level of his memory impairment. Without a doubt you need to have your husband evaluated and by all means do not let him drive if he is getting lost. Also contact the Safe Return through the Alzheimer's Association and have him registered and get a bracelet for yourself that shows you are a caregiver for a person with memory impairment. Go to all doctor visits with him. None of here, with the exception of marsh, are doctors but we are all experienced with the caregiving role and phases. You will find super duper support here and valuable advice. Tomorrow, make that appointment for your husband to be evaluated..start with your primary doctor if that is the way your ins has you set up. You will also have to think about meeting with an elder care attorney who can help you navigate POA, DPOA, and other essential areas to protect your assets. What you have described is significant and you are right to be worried. Keep us posted. Joan will be on line shortly to welcome you. Read her blogs, they are very very good and insightful. Hang tough.
srsteen--Welcome. Mimi gave you a good welcome and introution to beguning basics. The diagnosis is important early on, because there are treatable conditions which can appear to be dementia but are not. If it is some form of Dementia, there are some meds which can slow down the symptoms. Also, not all forms of dementia decline exactly the same. Some meds work for one and not another. Joan will greet you and invite you to check out several areas on the site. Above all, read. Look over the Threads and read those that fit your needs. Ask questions. We're here to help.
Welcome srsteen. To enforce the getting to a doctor for evaluation - do it. There is a thread somewhere that has a long list of treatable conditions that mimic dementia. I am 58 and My hb is 63 and was diagnosed 2 years ago but had symptoms as far back as 2003 or before.
Thank you so much for your quick response. I appreciate the support and recommendations, and it's great to know that there are so many people who have the experience in this situation and will share their knowledge and suggestions. I will definitely hang tough and know that I will need much patience and understanding.
Having recently been through what you are experiencing I can share some advice.
You definitely need to get your husband to the doctor. I used several techniques to accomplish that. #1 I explained to him that his inability to recognize his memory problems is common, but he was just going to have to trust me that there is a problem. #2 I explained it was possible that he had a brain tumor or water on the brain, and that both those conditions are treatable if caught early. If he doesn’t catch them early he will end up with irreversible brain damage. #3 I explained that I loved him and I would not allow an undiagnosed problem to take him away from me. Finally, I explained #1 and #2 to his brother and enlisted his help in convincing DH to see the doctor.
Word of warning about your expectations. Don’t expect your doctor to appreciate your concerns or share your fear of dementia. Your family physician will probably insist your DH is too young for dementia, and will chalk his symptoms up to stress, or perhaps depression. You should be prepared for what you are going to do when the doctor suggests anti-depressants (we opted not to fill the Rx because I knew those drugs would only complicate the situation, and I knew it wasn’t depression). It took me 17 months to get a diagnosis for my husband. You can read my blog to get a glimpse of what you are in for http://downtherabbithole-mary.blogspot.com/ It is very frustrating, but it is what it is. The latter was actually my motto for a year or so.
Final word of advice. If you have any kind of control issues, like I do, you better dial that back now. This may not be something that can be fixed; and you may have no control. Thinking otherwise will cause you a whole lot of stress.
Welcome to my website. First and foremost, you must get a proper diagnosis. Dementia is a symptom of something wrong. I always explain it this way: Dementia is like a fever. If you have a fever, there is an underlying cause - maybe bronchitis, maybe pneumonia, maybe menegitis. The causes are infinite. Knowing what the cause is will determine the proper treatment. In the case of dementia, a complete medical and cognitive evaluation will determine if the dementia is caused by a stroke, vitamin deficiency, fluid on the brain, Parkinson's, Alzheimer's, Frontal Lobe Dementia, Lewy Body Dementia, brain tumor. Once it is determined what is causing the dementia, proper treatment can extend QUALITY of life. It may be that your husband's dementia is caused by something treatable, like fluid on the brain or vitamin deficiency. If it is Alzheimer's Disease, which is not curable, it still can be stabilized for awhile with medications.
Now, how to get him to go to the doctor. If you have a primary doctor you can trust, let him do the dirty work. Memory doesn't even have to be mentioned. He can tell your husband the doctor sees signs of a silent stoke, and it is important that he get tested to prevent another one. Doctors can be very creative if they want to be. Go to the home page of this website - www.thealzheimerspouse.com and look on the left side. Scroll down until you come to the section – Find a Memory Disorders Clinic in Your Area. Click on that and you will find a list of the specialized Memory Disorder Clinics in your area. It is extremely important to go to someone who specializes in memory disorders, not just any neurologist.
Let me explain more about my website. You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD (Early Onset Alzheimer’s Disease – those who are under age 65) members - two of which focus on the young teens whose parents have EOAD (early onset AD). At age 63, this applies to your husband. There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
I got my husband to the doctor by reminding him it was time for his physical and I made the appointment and I went with him. After we explained all of the symptoms, and the doctor did a physical on him, the doctor then said that he was okay! He passed the stupid "test" with flying colors! It made me feel like an idiot! It took me A YEAR of documenting the personality changes, the obsessive behaviors, and the memory losses, in detail (5 pages typewritten, single space) and requesting an MRI and an appointment with a neurologist specializing in AD - at the next annual physical. After he read my letter (given to the nurse just before the doctor saw us), he did the physical, and scheduled the MRI and the appointment with the neurologist. (The following appoinment he told me he thought that my husband had had a stroke, not AD - but that it WAS AD.)
I did get the Durable Power of Attorney and the Living Will updated. The Will was still valid. I made certain my name was on everything we owned with his and "OR" between our names, so that I owned it as much as he did. Please seek an Elder Attorney as has been suggested to you. Do not put this important step off.
Also, I went to Verizon and got Chaperone phones - with him being the "child" and my daughter and I being the "parents" so that we could always check and see where he was at any time. It will show the address where he is and a map of how to get there. This gave him peace of mind as well as us. He knew how important it was to keep the phone with him at all times - attached to his belt - that way if he got lost, he knew we could find him quickly.
There is a "Caregiver Tips" on Joan's page that is a list of suggestions that made our lives easier. I highly recommend you read it for good advice from us all!
Please feel free to ask us anything, and rant and rave when necessary!
Welcome, Systeen. Your description of your husband's orientation issues really brought back the memories: this was the very first sympton my dh had, a couple years beofre diagnosis and long before he had any other memory loss. He had always been the one who knew the route and could find the way back to the hotel in any strange city. When he lost this ability and even started hesitating at familiar crossroads It should have been a sign to me that something was seriously wrong, but the change was soooo gradual. This was also the only change that he would admit to when I finally got him to a neurologist (through the family doctor where he was told during an ordinary diabetes checkup that he needed an extra examination by a gereontologist(?). Then one thing led to another. ).
Welcome Systeen, Sorry you have to be here, but like everyone else said it is a good place to be for info & to just vent when you want to. Your story sounds EXACTLY like mine. I voiced my concerns to our family doctor who my DH sees every 4 months for blood work. Well our doctor had him do the clock test (draw the face of a clock with a specific time) & DH drew the circle, put the numbers haphazardly on the outside of the circle & didn't know where to put the hands of the clock. So our doctor recommended that he see a neurologist. Of course DH would NOT let me make an appointment; after all there was nothing wrong with him! Of course things kept getting worse so 3 of my 4 children decided that they were going to have an intervention with him. My sons live away so one came in (the other couldn’t get away but was supportive) & my daughters & son-in-law were there. After lunch they sat him down & started talking & he interrupted & started to protest, but my oldest son took control & told his Dad that they were talking to him as adults & they want him to listen to what they have to say. They then proceeded to tell him (gently) of the changes they had seen in him, they took turns talking to him & at the end the oldest son told his Dad that they all wanted him to go to the neurologist to get examined. My DH said, “Well I will take that into consideration.” And the oldest son said, “No Dad, Mom is going to make an appointment & you will go!” He went & was diagnosed with early dementia. He was 59 at the time. He went for follow up appointments at the neurologist for about 2 years & then refused to go back; after all” There is nothing wrong with me!” So now our family dr. prescribes the Aricept & Namenda he is on. My DH NEVER liked going to the doctor so his refusal to go to follow up appointments didn’t surprise me. Anyway, I hope you have an easier time getting your DH to the neurologist than I did. ((((HUGS)))) to you!
srsteen, I am glad that you are here. I am not glad that you have to be here though. I agree that you should get him diagnosed, my DH is 72 and I think, looking back that he has had dementia for a long time. There are other things that it could be but you will never know for sure until he is screened. Your DH's not being familiar with the road that he has been on before is a lot like what my DH did. He would be going from stop light to stop light saying I don't know where I am and then by the time he got to the stop light he would say that he knew now and then it would start all over the next stop light. Very unnerving for me because I didn't know where we were because we were in a new town and I wasn't driving. Anyway, stay with us and we will all support one another.
All of the support as well as recommendation that I have received from all of you has been so uplifting. I, like some of you stated, think I have been reluctant to insist that my DH go to his physician because I really think he would pass the "stupid" test. However, even though his symptoms are gradual, I think with certainty that he has early signs of dementia even though he could still answer who the president is, what day it is, and draw a clock. I think I will have to provide the doctor with a note that specifically details the signs I see. Thank you all for the warm welcome to this site.
srsteen ... many of us at this site can detail experiences of having had our spouses misdiagnosed at first. In my case, my wife was misdiagnosed for nearly 3 years with stress, then anxiety, then depression ... when I was sure it was either MCI or early stages of AD ... until finally diagnosed with AD at age 63. Here's a suggestion for you. Go to some reputable websites such as mayoclinic.com, johnshopkins.com, webMD, etc. and note symptoms listed for stress, anxiety and depression. THEN go to those same sites or to this site or to the alz. assn site to learn about warning signs of early stages of AD. Write down those warning signs that you think your husband has demonstrated ... short term memory loss, disorientation/getting lost in the car, etc. plus those symptoms you noted in your first entry here. Give this written list of symptoms to your doctor and if he/she suggests to you that your husband's problems may only be due to stress/anxiety/depression, you can then say NO ... that your husband has symptoms that are NOT listed as warning signs of either stress/anxiety/depression and your doctor needs to perform additional testing. Or, better yet, ask your doctor to refer you and your husband to a neurologist or geriatric psychiatrist more familiar with memory disorders and AD who can do a more complete evaluation!
go to this page and download the SAGE test. It will give some indication but like the MMSE people can still pass it with flying colors and have AD. But, it is a start and take it with you to the doctor.