Jun 012012
 
Lee and Val

I’m Valerie Ferrero, wife, mother and care partner. My husband Lee was diagnosed with younger-onset Alzheimer’s (also known as early-onset Alzheimer’s)  in November 2008. This is the beginning of my story…..

It is difficult to know what action to take, what plans to make, or what the future holds when you don’t have the answer to the “elephant in the room.” It took more than seven years for us to get Lee’s diagnosis of younger-onset Alzheimer’s.

We began noticing problems when Lee was in his early- to mid-50s. He was the CEO/President of a local non-profit. I realized that things were worse than I suspected when his staff started calling me to find out what was going on or why he missed a meeting. I had been noticing early signs for some time by this point.

I really didn’t know that the problem would turn out to be Alzheimer’s. For one thing my husband was young.  Alzheimer’s happened to older people — or so I thought. He kept telling me it was the stress of his job, and I preferred to think that rather than any alternative.

In our quest for answers, we visited the Mayo Clinic in Scottsdale, Arizona, in 2006, where Lee was diagnosed with Mild Cognitive Impairment and Executive Dysfunction. The doctor prescribed a low dose of Aricpet and suggested that Lee might want to retire. He also stressed that Mild Cognitive Impairment does not necessarily turn in to Alzheimer’s. The doctor wanted us to return in a year.

We returned home and went about our daily lives. We saw a bit of improvement in Lee’s memory issues. But as the year went on, I was still hearing from his office and noticing changes myself.  Lee has always been a “people” person. Suddenly, he didn’t want to go to events or meetings. I sensed changes in his personality.  Negativity was creeping in where it had never been before. The little things were slowly becoming bigger issues. My once confident husband was losing his self-confidence. He began to second guess himself. And he worked longer and longer hours to make up for the loss of work time in the day.

His work was still stressful and he had become distant and defensive.  Things were getting progressively worse. We returned to the Mayo Clinic about a year and half later. The first visit we were there for several days. This time we flew in and out the same day.  The diagnosis was still Mild Cognitive Impairment and Executive Dysfunction.  The doctor wanted to continue to monitor his progress.

Again, we continued on in our everyday world, but friends were beginning to ask if anything was wrong. Lee was showing more signs of something being very wrong and of considerable stress. He had convinced himself that it was only work-related stress, but by this time I could no longer ignore the “elephant in the room.”

Our children were very aware of the problem from speaking with him every weekend and when they visited. The same story would be repeated over and over again. The same question asked over and over again.  This was creating a great deal anxiety for me. I was working and trying to balance the situation at home. It became increasingly difficult. I really needed answers.

I began to notice several troubling changes. He became dependent and seemed to need to know that I was around. This was something totally alien to me. I finally mentioned to our doctor that we needed to do something closer to home. This is when he mentioned the University of California, San Francisco. Another patient suffered similar problems and had had good luck at UCSF.

We scheduled the appointment as soon as possible. Our daughter, Jenny, was pregnant with our grandson John at the time. Our son, Eric, lives in Manhattan. Eric offered to go to the clinic with us. At first I resisted thinking of his costs and time. Fortunately, I relented and he met us in San Francisco. He set up the hotel rooms and everything for us. It was really helpful to have him there.

We were scheduled for early in the morning. I brought copies of all of the records from our never-ending quest for a diagnosis. The day before the visit Lee had an MRI of the brain. We picked up the CD of the scan to take with us. Lee went off with a couple of doctor’s and Eric and I met with other staff. They asked a lot of questions, and I gave them the records we’d brought with us. A little after noon, Lee and the doctor came out. The doctor said that we needed to return about 2 p.m. for a meeting and review of the morning.

Off we went to lunch on the campus. We arrived back at the memory clinic and waited in a conference room with a long table. We were joined by the different members of the staff that the three of us had been meeting with earlier, as well as students and some other doctors. There was a doctor from England. Dr. Bruce Miller, the memory center director.

Dr. Miller asked what we wanted to get out of the visit. My response, “answers.” He then explained the diagnosis. It was “Early Onset Alzheimer’s” (now often referred to as “Younger Onset Alzheimer’s).  He did several tests right there with Lee and asked him a number of questions. The other doctors also asked questions.

Dr. Miller advised Lee that he would have to retire. Lee didn’t think that retiring would be necessary. Eric asked Dr. Miller, “Would it be feasible for my Dad to get another job? He thinks that all he needs to do is get another job without stress.” Dr. Miller advised Lee that retirement was a must. He would not be able to work again. He could get another job and not remember what he was doing one day or why he was there. He recommended doing any of the things that we really wanted to do in the next couple of years.

Even though I was expecting to hear something like Alzheimer’s, it was still mind numbing to actually hear it. Dr. Miller asked if Lee would be willing to make a video for students. He wanted to demonstrate a highly functional, articulate younger than usual person with Alzheimer’s. Lee readily agreed.

We went back to the hotel and called our daughter. Even though she too knew the probable outcome, she was in tears. We were all both physically and emotionally drained. The next morning Eric headed back to New York and we started the four hour drive home.  We talked a little but were really feeling the weight of the diagnosis and lost in our own thoughts.

Forward to today: On most days, I understand and accept the diagnosis. Some days, however, I wonder if there’s been a mistake. For a brief, shining moment our world seems normal.  Then in the blink of an eye, we’re back in the reality of the situation. But while Alzheimer’s complicates our lives, it doesn’t end them. We try to live more in the present and to educate ourselves as much as possible about the disease. Knowledge helps us cope. We  attend a support group for people with early-stage Alzheimer’s and their care partners,  and we volunteer for the Alzheimer’s Association whenever possible. They give so much too so many that we like to give back whenever we are able.

Read Lee’s experience receiving a diagnosis of younger-onset Alzheimer’s.

Blog author Val Ferrero is a Senior Admissions Advisor with California Polytechnic State University in San Luis Obispo.  In 2008, Val’s spouse Lee Ferrero was diagnosed with Alzheimer’s disease. Since that time, Val has committed herself as a care partner and advocate in the fight against Alzheimer’s. Val and Lee have been married for 41 years and together have 2 children and one grandchild.

  75 Responses to “Val’s Story: A Care Partner’s Perspective on Her Husband’s Younger-Onset Diagnosis”

  1. A heart wrenching story. Is Lee still driving? You seem to have a strong, supportive family. My actioin is to seek a clinical trial for my wife. She is passing the mild cognative stage of AD. I am her caregiver. She is the love of my life. We try to make the best of our fate. I am still working while supporting my start up company a challenging duel and must win situation. There is hope thru clinical trials. (I recently defeated stage IV, lymphocytic leukemia, aGVHD (transplant side effects) thu my bone marrow transplant. Keep the faith and my best.

  2. Finally, i was diagnosed june 2008 with early on=set thru a pet scan. cannot tolerate aracept but namenda has worked for me. i had to quit work early too. THIS IS THE FIRST ARTICPERLE I HAVE READ ABOUT THE ACTUAL PERSON THAT HAD IT. ALL BOOKS ARE FOR THE CARE-TAKERS AND WHAT DO WE THAT HAVE IT NEED TO DO TO SEE WHAT IS COMING UP AND HOW WE WILL REACT AND HOW TO PREPARE. I AM ON MY OWN AND DON'T HAVE A CLUE WHEN THE DAY WILL SNAP THAT I DON'T KNOW WHO I AM. KEEP THESE ARTLCIES COMING SO I CAN LEARN SOMETHING. THANKS, VICKIE AGE 65

  3. My husband was diagnosed with Early Onset at age 61 but they said he probably had it for at least 2 years prior. Looking back I remember he had trouble with things that had been easy for him. You are in my prayers. Instead of loving him less I loved him more because he needed me to & I knew we only had a brief period of time to do things he wanted to do. My husband also was told to do the things he wanted to do in the first two years. Please do them You won't regret it.

  4. I have lived your story and my heart is with you and your husband. My sweet husband is only 66 and already in a skilled nursing facility! Please make sure he does enjoy himself now and that the family is around as much as possible while he still knows them. It all happens so fast!

  5. Thank y for sharing

  6. My husband was diagnosed with Alzheimer's at age of 56 but there were signs of the disease a year to 2 years before this. He is now in assisted living for Alzheimer's. It was a hard discussion to make and I still think about bring him home for me to take care of him. It may be a long road ahead for him. My thoughts and prayers go out to families that have to deal with this disease, maybe someday there will be a cure.

  7. My husband was diagnosed in 2008 at age 52 but we noticed problems starting in 2005. He does not drive and sits and watches TV most of the day. He gets confused easily. It is hard carrying a conversation with him I am busy trying to take care of our financial matters and reducing our debt. I know the worse is yet to come. This man had his MBA, was an accomplished musician, enjoyed surfing, windsurfing, tennis etc. He is happy. I just have trouble reconciling who he was with who he is now. We have gone out to UCSF for the past 2 years. This will be our third. They will do a new pet scan on him that will hopefully show where the amyloid plaques are. He will also have a lumbar puncture. We have not met Bruce Miller but have had his excellent doctors and staff take care of him. Hoping these test might provide some answers. We have a 25 year old daughter and 21 year old son still in college. The financial part is the hardest part right now.

  8. my wife of 58 years young was diagnosed with early onset alzheimers,but they figured she had early symptoms 5 years before,she had a very sore lower back & we thought she had chronic pain relating to her memory lost,we waited months for pain clinics appt. & nothing changed,when she was diagnosed at 58 , the doc said she already had moderate + early onset,the medications did not work well at that point, she could still function ok as long as i was with her & did not leave her alone in a shopping ctre. or by herself at home, she loved to travel so i took her on 1 last trip that winter to Arizona & Hawaii, as soon as we stop travelling her mind got a lot more confused, thinking back when you are travelling around your mind is constantly active on new things which helps I think. I finally had to hire a caregiver to help @ home but that crazy disease took a huge toll on her memory @ we finally had to go to a hospitol in Toronto that specializes in Alziemers, she passed away @62 @ the hospitol from aspirated pneumonia. It is so hard on the family to watch someone lose there mind at a young age. Please live & enjoy each day to the fullest, because life is short sometimes

  9. My husband was diagnosed with Alzheimer's in June 2005; he was 59 years young. He had to retire because he was a heavy equipment operator as well as supervisor. The doctor said he could be held liable if my husband did any kind of damage with the equipment. I did not know it at the time but the guys he was supposed to be supervising were covering for him when he wasn't doing things right. I was also noticing him being different at home. He slept a lot and didn't want to go places anymore, other than church. He had never talked about anyone but he had now started talking about someone at work. That wasn't like him at all. ……. My husband died in May 2011. I promised him I would never put him in a nursing home and I didn't; I took care of him at our home. I had help from hospice the last 2 weeks when I could no longer get him up, dressed, etc by myself. Alzheimer's is a horrible disease and I hope a cure is found soon.

  10. This is a remarkably poignant account of what a spouse endures. I felt as if I lived the experience with the writer.

  11. my husband was diagnosed three years ago at 63, spent 10 months last year in assisted living, but is back home with me now, didn't have the money to stay there. Everyday is different, he doesn't recognize anyone, his behavior is really bad and I am sure that I have a long road ahead. It has been a lot easier for me to have him home though, because I couldn't leave him at the home, I was there night and day, so now at least I am at home and don't have to go out to see him. THis is such a horrible disease for the patient and their caregivers, very draining physically, mentally and financially.

  12. My dear brother died at age 56 from this disease. I am heartbroken for all who walk through this devastating illness. God bless them.

  13. Does anyone think that alcohol drinking has anything to do with this terrible disease?????

  14. My dad was just diagnosed. I am having a hard time dealing. My dad and my family moved in together, so I can watch him better. Some days he is perfectly fine, and then he's not. He only wants me around. If I go with a friend for a few hours, he is angry. Really mad. He paces. Misplaces things.. etc. This is only been 6 months and I think I cry every other day. I am not giving up, but I am so exhausted. I work full time, and my husband has been a great help at night but to make time for everyone is really hard.
    Thanks for sharing your story, I see alot in your story, that my dad is doing now. I just need a support group, and lots of patience.

  15. I have read all the replies with great interest. My husband and I are in our 6th yr of the disease. This year has been the worse. Pneumonia caused him to be hospitalized the month of March, 2012. Did excellent in rehabe, so brought him home. But within a week showed signs of mini-stroke. I have a nursing degree for which I am so gratful. All the terms the Drs throw your way during the diagnostic phase is overwhelming. Don't know how lay people keep up with it all. My husband is 77 yrs old and is now in a nursing home atmosphere. He still knows me and I go almost every day to see him. He is also a diabetic. Believe he has neuropathy of the legs/feet. Sometimes he cannot get out of his chair. I have a tear in my left rotator cuff and lifting him is almost impossible for me. When he went to the nursing facility April 20, 2012, I was mentally, physically exhausted. You grieve everyy day for the person he once was. Praying that God will be merciful and will not let him suffer. Have three children but they cannot cope with their father's illness. My faith has really been tested but I know in my heart that God is in control. Rose

  16. Hang in there, as my husband has younger onset AD, he was diaognoised in 2008. This year has been one of the most difficult times in our lives! He is now 59 years old & has had AD for 4 years now, he has his good & bad days and has just entered a new stage as he has days when he can no longer recognize his children! Our kids are still young we have a 19 year old & a 22 year old, both still in college. I am also very young in my mid 40's, it is so difficult, being a caregiver to your husband as I feel that this is the age when we should be enjoying the fruits of on, it gets much more difficult, God please help all of us who have loved ones who suffer from AD!

  17. My husband is being tested on 6 August 2012. Today I am having a pity party! My husband is 72 and I think this has been going on for many years! God is good and I know he will help me get through all of this!

  18. My husband was diagnosed at 65 with early on-set AD. He too probably had it earlier. Somehow, he compensated, saying a lost word or memory was a "senior moment". We both were working and his has the type of personality that keeps those around him laughing. At home, he was beginning to have mood swings and depression. We were arguing more about small things. My job was stressful and he was retired from two and working as a volunteer school tutor. He use to love to cook and had meals ready when I go home exhausted. What a joy and gift! Now he would be home half the day and nothing would be done. He just watched TV, the same movies over and over. When he flew to a HS reunion and got lost in the airport and couldn't remember how to drive home, I knew I had to schedule an appointment with a neurologist. He listened, took a lot of preliminary tests and scans to rule things out. He got a physical and then said he most probably had AD. A more detailed cognitive test would have to be administered so we signed up for that and were fortunate to get in within a couple of months. This test was all day and I sat in a waiting room so when he came out for 15 min. breaks after each battery of tests, he would see me and we could share moments of encouragement. I could tell he was having a hard time because he would say, "I couldn't even put the blocks together" or remember a pattern of drawings. The scores were tallied and compared nationwide to other men his age, general and educational background and professional skills. Along with the PET, blood tests, brain imaging and verbal interviews of each of us, the diagnosis of AD was confirmed. I'm glad we had these tests done because we have more options for services with a formal diagnosis. Not having much medical history for his parents, I wanted to make sure we had the paperwork just in case, our children needed for their own health concerns. While my husband quit working, I continued for one more year. In that year, we paid off our mortgage so we wouldn't have to worry about losing our home. I also sought out legal assistance to explain what estate laws and probation of our wills would entail while he was able to understand what the estate lawyer was saying and could sign any paperwork. This is something I would recommend for consideration since each State is different.Be proactive and know what to expect BEFORE you need it. We've been married 43 years and putting things in my name wasn't easy. We also redid our wills. I'm also glad I did that because now my husband can't spell or write his name anymore. I carry a medical directive and POA with me at all times. I also signed him up with Life Alert and he wears a necklace that indicates he is memory impaired. He's wondered off 3 times, once when I fell asleep exhausted, so now I don't leave him alone and I make sure I can see him when he's in the yard. Your story is different than mine or the other respondents but it is the same also. We all know what you are going through because we're making the same agonizing journey with you. Thank you for sharing your story. It's 3 am and I'm grateful to have found this option to sharing my story as well as finding support by others. Now i need to get some sleep for the next day. Fortunately, my husband will sleep in if I'm in the bed too! God bless.

  19. All of these stories are so touching, thank you for sharing. Looks like we are all in similar boats. My mom is about to be 61 and was recently diagnosed, but my siblings and I have been noticing things for the last 8-10 years maybe. Seems like things have been progressing alot faster the last couple of months. My dad is her caregiver most of the time but since I live in the same house I am the pm caregiver while he is at work. I have 3 kids and this really affects them too. It is so sad, the other day my son said " I miss the old grandma" makes me sad that they will not know her as normal anymore and my young nephew and niece will never remember grandma the way the others do. Things are difficult now, but we are all preparing for the worst to come.

  20. Thank you all for sharing… My husband of 39 years was diagnosed 2 years ago… We, our story is so much like everyone else's he is ( was) sooooo smart and it breaks my heart to see him struggle with things that he could do with his eyes closed….I have been looking for a venue to talk with people that are going through what I am….thank you…..

  21. Thank you for sharing Val. I can see your pain. My husband was diagnosed with Early Onset of Alzheimers in 2009.
    the doctors at the hospital told me that within 5 years he will decline. He is now in a Facility and his neurologists told me that he is now at the End Stage of Dementia. He is now 60 years old and in palliative care. I always come and v isit him everyday. It is very hard to take. He us now on puree diet and has difficulty in swallowing. Last year this year, he was up and about attending Christmas parties and going to field trips. We had a wonderful time. My two boys are upset how their Dad came about like this. He knows me, our children, our dog and his favourite music but could not articulate. My husband suffers seizures every now and then. We have been married 26 years now. Wehn we were both working we always talk about our retirement. This is how we end up with. It is so unfair. He is not even retiring age. God Bless all those caring for EOD. Thank you.

  22. My husband was diagnosed in April 2012 Lewy Body Dementia he was only 53. I've seen signs for at least 2 yrs and finally had a cat scan . He's had other health problems and he seems to be declining quickly. We have a 16 year old daughter still at home, our son is in the Navy he's 19, he has 3 adult children also but they don't seem to care or keep in contact. I'm still working but I'm concerned about leaving him alone. He has a hard time with being around people. I'm not sure what to do at this point. I'm doing this on my own and I'm overwhelmed.

  23. have recently taken in an old friend that I used to work with. she was diagnois with Alheimzer desease and living with her daughter was not working out for either of them. My friend forgets things that happened or is said almost immediately, and it is difficult for people to understand that she can't help what is happening to her. My question is what would be best for her. Would she be better off or cared for better in an enviornment with professional caregivers, or is she better off here in my home. . I attend meetings different times of the month. I'm reluctant to leave her at home alone. She recently fell and banged up her arm. It is hard to determine what stage of the desease she is in. She knows what is going on around her, but she doesn't seem to care to much about anything, including daily hygene. can you give me some ideas as to what stage she is in, and if i am doing what is best for her.. We have completed power of attorney paperwork, and she has put my name on some of her bank accounts. I'm really confused at the present time. ( she is 75 years old) Please help.

  24. Thank you, thank you, thank you.
    I'm dealing with my 81-year old husband's dementia (no Alzheimer's diagnosis yet) that he denies is occurring. We both blamed it on his open heart surgery and very stressful, traumatic pacemaker installation in Dec. 2010.
    Our family doctor diagnosed "mild cognitive impairment" 8 months ago.
    Yet the changes are getting worse. He wants me next to him (or in sight) all the time. He repeats questions over and over again. He wants reassurance (almost hourly for days) that we haven't missed an appointment that is scheduled in 2 weeks. He forgets names, words, where his clothes are, dishes go, glasses are etc. etc. He gets disoriented geographically. When driving (which he does very carefully), I have to tell him which lane to get in, where to turn, what exit to take, etc. every 5 or 10 minutes. He doesn't want to get involved with anything or anyone.
    I was hoping our family doctor would help, but last week he didn't change his diagnosis, and pronounced my husband "fine". That just gives him courage to deny what's happening.
    I'm exhausted, without family near by.
    This blog makes me feel I'mot alone.
    Thanks

  25. Thank you Val. Your story could have been about me..I have been unable to find information about early-onset alzheimers from people who actually have the disease…and can still accurately describe their onset experience, symptoms and current status. There are a lot of caregiver stories (God bless them, all of them) but it seems they are mostly from their perspective.
    As a 61 year old health care professional with EOAD, I know what it's like to slowly lose the ability to function in the work place. Frustration, denial, depression, anger and fear feed intolerable levels of stress which ( I believe) make the symptoms worsen.
    I was actually RELIVED to get a diagnosis…it explained so much. I was able to go through the Disability process rather quickly due the compassionate assurance initiative program(SSA) and start to plan for a rather uncertain future. Thanks for letting me know I am not alone.

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  27. It is very sad to read from you that your husband is been suffering from Alzheimer’s. Appreciate your courage for looking after you husband since twenty years .It is really a victory in your life.

  28. For a brief, shining moment our world seems normal. Then in the blink of an eye, we’re back in the reality of the situation.

    The above sentence resonates with me and is the cruelest part of this dreadful condition that my husband (nearly 80) is suffering from though he is in denial, and to date has refused to see a neurologist, despite his GP's advice given over a year ago. We have retired in rural central France and though I speak some french I cannot contemplate joining an Alzheimer's association here since the town is 45 minutes away and I am too tired to try to listen to or explain the situation in french. So I would like to be able to be in touch with people in similar situations on line. I do have a small coterie of good friends in this region and they are immensely helpful, but only another carer of Alzheimer's in its early stages can understand what I am going through and maybe offer some advice. He seems to be deteriorating more rapidly of late and has moods that I can observe as they take over his normally kind and loving personality. Thank you for listening. Valerie Muir

  29. My husband was diagnosed with mild dementia in July 2013. He turned 65 in July. We just celebrated our 34 anniversary. He is on the Exelon Patch since July and Risperidone since Sept. 15. He started hullicanating saying people were living in our house is why the Dr. prescribed Risperidone. The last two weeks he seemed is old self. Tonight I am heart broken he told me his wife was dead and didn't know who I was. He would never marry me. His wife was nice, organized and sweet. It is very hard not to take those kind of comments personally. He will probably back to himself in the morning and not remember the conversation. It is very hard. PJeff

  30. I AM SO DISTRAUGHT, I HAVE BEEN TAKING CARE OF MY MOM WHILE WORKING FOR ALMOST 9 YEARS, THE LAST 4 HOWEVER HAVE TURNED INTO A NIGHTMARE, STARTING WITH PNEUMONIA, THEN 4 UTI'S, AND A MILD CONCUSSION, WELL OF COURSE, MY FAMILY ALL THOUGHT DEMENTIA WAS SETTING IN BUT I WAS TOLD BY DRS. THE UTI'S CAUSE THESE SAME SYMPTOMS, AND SINCE I AM WITH HER, I REFUSED TO BELIEVE IT, NOW SHE IS GOOD ONE DAY, HAS OTHER DAYS WHERE SHE WANTS TO GO HOME AND DOESN'T KNOW ME, I AM IN THE MIDST OF GETTING HER TO DIFFERENT DRS. HER FIRST CAT SCAN JUST SHOWED MILD CONCUSSION, AND NO WHITE BRAIN MATTER, HER BLOODWORK PERFECT, NOW I NEED TO FOLLOW UP WITH NEW CAT SCAN, HER MEMORY IS AWFUL, SHE CRAVES SWEETS, AND PUTS THINGS IN CRAZY PLACES AND BLAMES ME, I KNOW IT IS HARD, I HAVE LUPUS WHICH MY DR. SAYS I NEED THE CAREGIVER NOT TO BE TAKING CARE OF HER, JUST SO DISTRAUGHT DON'T HAVE MUCH HELP TILL RECENTLY, MY OLDER SISTER IS HELPING ON WEEKEND, MY OTHER SISTER IS IN FLA. AND MY BROTHER DOESN'T WANT TO DO IT AT ALL, BUT TODAY HE TOOK HER FOR SOME HOURS, NOT ENOUGH. MY SON HELPS WHEN HE CAN, DOES ANYONE KNOW OF ANY SUPPORT GROUPS, AND ALSO HOW DO THEY MAKE A POSITIVE DX. AS MY DR. DID NOT GIVE HER ONE YET. SHE DIDN'T RESPOND WELL TO ARICEPT, SO SHE IS ON MILD ZANAX THAT IS ALL, HOPEFULLY IT WON'T GET WORSE, I GUESS MRI IS BETTER BUT SHE IS SO PARANOID I DON'T THINK SHE WOULD SIT STILL UNLESS SEDATED. ANY SUGGESTIONS AND WHO CAN HELP ME IN NJ? ANY PROGRAMS, THAT AREN'T TOO EXPENSIVE, MY MOM IS IN BETWEEN, NOT ON MEDICAIN, HAS 2 INSURANCES, BUT DOESN'T HAVE MONEY FOR CAREGIVING, IT WOULD RUN OUT IN MONTHS, AND I CAN'T THINK ABOUT ASSISTED LIVING, SHE HAS HER LITTLE DOG, BUT CANNOT BE LEFT ALONE, EITHER, NOT FOR A MINUTE AND I CAN'T KEEP THIS UP, I AM SICK AND THE CAREGIVERS GET SICK,, EVEN IF THEY DON'T HAVE A BAD DISEASE LIKE MINE, I HAVE HAD IT FOR YEARS ALSO, WHICH I AM LUCKY TO BE ALIVE MYSELF, MY MOM WILL BE 88 YEARS OLD, THIS JUST STARTED 3 YEARS AGO, ISN'T THAT OLD, BUT STRANGERS SAY, THEY NOTICED THINGS YEARS BEFORE, TRYING TO GET WORDS OUT, SOMETIMES ETC. JUST DON'T KNOW WHAT TO DO, OR WHAT DR. IS GOOD, I DON'T SEEM TO FIND ANY ANSWERS WITHOUT DOING ALL THE WORK MYSELF. THANKS FOR LETTING ME VENT!!

  31. Val Ferrero has said it all – "Some days I wonder if there's been a mistake. For a brief shining moment our world seems normal. Then in the blink of an eye, we're back in the reality of the situation."

    I live in France with my husband who is in the process of having tests – his MRI showed atrophy of the frontal lobe but he doesn't accept the diagnosis and will shortly be having further tests and a spinal tap. His memory and cognitive faculties are affected and behavioural changes are taking place. He wants a "proper" diagnosis to the degenerative processes that have been taking place for over two years now and still accuses me of being (and suffering from) the problem. Socially he is fine and to all intents and purposes seems to be normal though a bit vague and forgetful. We are both originally English, just reached our eighties and are otherwise healthy and energetic.

    I need help in handling his unpleasant moods which are usually in the late afternoon into the evening – he argues about every single subject sometimes quite heatedly and though I try to ignore it all I can't always manage to do so. I walk away but he keeps on with the subject ad nauseum – spoiling for a fight it seems though he was never like this previously. I am unable to join a society here in France, my French isn't good enough and the meeting place is over half an hour's drive away. Our g.p. is wonderful and so helpful but obviously I can't keep going to him when I am becoming overwhelmed. My only option is the web and help from people like Val who knows what it's like.

    Valerie Muir

  32. Wow I can't believe what you went through just to get a diagnosis. We asked our general practitioner for a brain scan to rule out dementia and had a SPECT scan that week. The test showed EOAD. I can't imagine having to fly all over the place just to get a simple brain scan. Having said all that, I am very sorry for the diagnosis. My husband is 57 and was fired from his job because of the problems he was having. He was denied unemployment, denied disability and I only work part time so you can imagine the financial difficulty we are having. Thanks for sharing your blog.

  33. Val, your story touched my heart! My dear husband is 76. Although no one anticipates that this will happen to them, you are not as stunned at 76 as when someone is only in their 50's. We have no official diagnosis yet. The MRI has shown cell damage in the hippocampus. Tomorrow we go for neuropsychological tests. I had just emailed my cousin that neither of us wants to face "the elephant in the room", then I saw that phrase in your blog. Thank you for sharing your story.

  34. Thank you! I am at the moment sitting weeping as I know my lovely kind talented man is losing his memory and his self esteem. It is breaking my heart and I just want to curl up hold him and die together. I know this is negative thinking but I am so scared!

  35. Dear Val,
    Thankyou so much for sharing your story. It is much like my dear sister in law's. My brother is a minister, and doing all he can to work through what it means to care for his beloved wife and our dear sister in law. I an currently worried about my (older) husband. I too, do not know where this will lead, but it helps to read of your journey and see your courage. May God bless you richly with all the 'quality time' together that you can have, and a deep sense of peace.
    From Pamela McLay- Henderson, Melbourne, Australia.

  36. I care full time for my partner that has been diagnosed with Alzheimer's, at just 53, would have been 52 if the doctors would have actually listened to me, being as I care for her 24/7 for the last 15 years. In 2 years she has gone from driving a car and shopping etc, all the things so many take for granted to not knowing how to use a phone or switch a TV on. There are many times she can't even see what is right in front of her if I ask her to hand me it. I cant begin to tell anyone how devastating it is to see the change in a loved one, this on top of her contracting viral encephalitis 15 years ago. It is like living a nightmare that never go's away, and worse knowing there is no cure and what the usual outcome is…………….

  37. I love my husband but over the last three years he has become forgetful lost our car keys, lost his mobile phone has become withdrawn and very forgetful even when we re visit places ( he does not remember how to get there) He was a very heavy drinker years ago and he has since cut down and yet he is very confused at times. He has just come back from a bike ride and lost all the stuff he got from the shops and does not know where they are – please help as I really feel upset and do not know what to do – I have said to him I am concerned and should be tested but he keeps laughing it off and sometimes he seems a bit shaky – he is forty five

  38. Hi Connie,

    Please reach out to someone at our 24/7 helpline at 800.272.3900. They can help you and also aid you in making contact with your local chapter. You can also join our community at http://www.alzconnected.org.

  39. My husband, 48, has similar symptoms but is diagnosed with rare condition called poems syndrome. He is, cancer part anyway, in remission, but on disability due to severe fatigue and cognitive problems. He lost his wallet for fourth time in two months: it’s currently gone for three days, but he just realized because he does not leave the house much. He’s disoriented in grocery store and now has lost cell phone. No one will give diagnosis of dementia due to his very rare disease. It’s sad, reading these posts, how comforted I would feel having diagnosis of something. Just had neuropsych eval showed auditory working memory in botderline range, slow processing. What does it take to get correct diagnosis?? He paces each afternoon around 3 to 5 and is irritable. He’s educated and had good career. He’s been ill for seven years. His affect goes from flat to euphoric. I wish we had diagnosis, even if dementia, then I would understand. I’m so sorry to hear of all Alzheimer’s diagnosis. But wish I had something concrete. Been to many doctors . Mayo clinic, etc.

  40. My husband was diagnosed at 59 with younger onset dementia, but we all saw the symptoms beginning at least 5 years earlier. Unlike some forms of dementia and Alzheimer's, his is not treatable because it is genetic, complicated by previous surgeries for two brain tumors. In the year since his diagnosis, he has lost his driving privileges, lost his job, and is declining more rapidly than even the doctor expected. Some days it is a nightmare, and I feel that I am constantly scrambling to find things to occupy his days that are not offensively simple for him, nor overly challenging. Some days he cannot dial a phone, and other days are close to "normal". What a wicked, unfair disease that has robbed us of our golden years together! I feel blindsided, and overwhelmed by the immense amount of responsibility now placed in my lap. How do any of us survive this intact?

  41. My husband also was diagnosed with dementia. It started with him thinking someone was misplacing his items. Then he started accusing people were stealing his gas from his car. I noticed one day that his car was damaged on the passenger
    side from front fender to the rear door. He stated that someone took a sledge hammer to & damaged it. He must of hit a
    guiderail on his was to an apartment building he owned. Then one night he went to collect rent and never came home. That
    same day, he called me at work and wanted to know when we were going to visit our son in Philly. I told him in two weeks
    for our grandson's birthday. He never showed up that night. I gave up worrying at 2:00 AM (I had to go to work the next
    day). I told/convinced myself that the police will call me. Sure enough, at 7:00 AM, I received a call from the 60 miles away
    stating he was in the hospital. I called off work & my sister & I drove there. He was not hurt, Thank you God. He took a wrong
    turn while trying to get onto the turnpike and hit a something in a construction area and damaged the car. It was still drivable. His vital signs were good but he could not remember what happened. He is retired and age 72. Our physician prescribed
    Aricept and the latest drug out, but I have not noticed a lot of change. He's only been on it for 6 months. He is very apologetic
    when he knows he did something and is always checking on me to see if I'm OK. He is hard of hearing and was on oxygen but
    taken away because he was smoking and caught his hose on fire. I feel his breathing and hearing problem contributed to this
    awful disease. He sleeps on a chair because it's easier for him. He gets upset if I tell him how to do something. I just walk away and keep an eye on him though. I know it won't get any better. He loved playing cards but can't remember how or even
    spider solitaire on the computer. I had to retire to keep an eye on him. He has four stents in him from two heart attacks.
    I wish everyone good luck with their patients and hope a cure can be achieved for this decease. GOD BLESS….

  42. Over the past 3 years we have had highs and lows my 57 Husband doctors deciding if he has Alzheimer's or not. You story confirms what I think I already know. Thank you for sharing your story

    Liz

  43. Hi my name is Melanie and my husband has been diagnosed with mild cognitive deficit. We noticed the past three years that something wasn't quite right. His mother had dementia and I was recognizing some of the signs. My husband has been retired for about three years and it seems a lot of his symptoms starting appearing after retirement. He went to our GP and did the in office memory tests and then an MRI and full panel to rule out infections. The in office test revealed the mild cognitive deficit. He scored 24 which is still not too bad. The MRI and panels came back normal. We finally did the PET scan and they found shading in the side lobes of his brain. Ruling out dementia they said it was Mild Cognitive Deficit which we already knew. I asked about putting him on medication and they said no as they cannot say it is Alzheimer's. But most likely it will develop to that. Is this normal to not put him on anything. We just have to wait and see is what the doctor advised us. I have done a lot of research and know that aerobic actvity and games and puzzles will help him keep his mind sharp. The problem is he is in denial and does not seem to be following through with what he should be doing. I am so frustrated and cannot understand why he doesn't want to help himself. We had a discussion tonight and I shared my frustrations about this. Now I feel pretty guilty and realize he needs my support. This is not always easy!!! I have to add that I am also moving my mother who has late stage dementia to my home town. She will move into a residential home but with that and my husband I am feeling very overwhelmed! Thanks for letting me vent!

  44. My husband aged 61 has been diagnosed with early onset Alzheimer's. He will not discuss it or accepts it. I'm not sure what my role is supposed to be. He seems distant and mad and I overlook all the mistakes as I'm not sure what to do. I'm in the dark and need advice. Can anyone help me…

  45. My husband is 57 and he has been forgetting, pulling away from almost everything and then it had bypass surgery I’ve been taking care of him the beginning of this year it got worse and he had to go into the hospital and now he’s in a convalescent home and I have so much guilt because I feel that I should be taking care of him not anybody else have nobody to talk to I know the only support I have is our two children I’m sorry thank you for listening

  46. Hello-My 58-year-old husband has been having the same problems for a long time. He's been tested a million ways but no diagnosis. Were they able to see anything on the brain MRI?

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