Hi, my name is Cindy. I am 46 years old and brand new here today. I found this message board by doing a search and I am hoping for some help and support.
My husband of 27 years, Bruce, was diagnosed today with early onset Alzheimers. I am beyond devasted even though I think we have known in our hearts for a while that this was a possibility.
Some background: his maternal grandfather had Alzheimers but developed it in his 70's we believe as best we can gather. His mother was diagnosed at 44 and died when she was 53. We have 3 children, 2 boys in their mid 20s and a daughter, 18. We were also told that they have a 50% chance of carrying the gene which will cause them to have EO Alzheimers.
We have had some reasons to believe in the past few years and especially the last 6 months that he needed to be seen and tested. He was seen by Dr Daniel Pollen at UMass in Worcester, MA. He had lots of bloodwork done, a brain MRI and a neuropsycho-something test done and the results of all of those produce a finding of EO Alzheimers. We are just lost and devastated and sad and confused and well, I am sure you all know how we are feeling.
To complicate matters, my husband owns his own business, a grocery store. We will need to make some decisions regarding that as well as income, etc.
Can you recommend where we go from here? What do we do? Books we should read? Websites to visit? I suppose once this sinks in we will have to roll up our sleeves and make some decisions and get to work but I don't know where to turn first. I appreciate any insight, advice, etc that you can give. And would really appreciate hearing from anyone who is in my situation. Thanks so much.
Welcome Cindy and I'm so glad you found us. Unfortunately, you & I have too much in common. My DH was diagnosed at 52 with Pick's, which is just one of the dementias out there as Alz is another. We had all the same tests and experienced similar devastation in our family as well. First let me say how so very sorry I am for you and your family and that as devastating as it all seems now, you will find comfort here. As far as reading goes, our bible is "The 36 Hour Day" and it has just about everything you'll need to know to get yourself started and then go online to find anything else you need. We have some very experienced people right here who post regularly who you will find most informative and supportive. I would also suggest to contact your nearest Alzheimers Association for more information as they are a wonderful resource. I think one of the first things my DH & I took care of was our POA's, updated our wills, medical POA and we discussed his long term care and final wishes. I too felt lost and wasn't sure where to go or what to do at the beginning but slowly I took control of the things I could and had to let go of the things I couldn't. I found that once I started telling our family and friends about the illness, the better I felt. I read everything I could get my hands on and then I just stopped because it all just became too overwhelming. I decided that I would just enjoy each day as it came and not worry about what "could" happen to my sweet DH. We were married 33 years last December and have two sons, 26 & 29 yrs. He was diagnosed and gone within 5 years and passed this last May at 56 years young. I miss him terribly but just keep putting one foot in front of the other. The wonderful people here have helped me to cope, laugh, cry and move on with my life. I hope I have helped a bit and please know we are all here for you.
You and your family will be in my prayers...
Welcome to the board jebridan. I am truly sorry for the situation you find yourself in but there is a way throught it. Janie has been in your shoes and has given you excellent advice. I am dealing with two parents with dementia so my situation is different and have little to offer at this time. But I did want to welcome you to the board. It's a great place to look for answers or just to vent. We all do understand.....
I will keep you and your hubby in my thoughts and prayers.
Jebridan - I've been in your shoes too, and recall how panicked and overwhelmed I felt at the start of this process. DH was diagnosed with early onset AD 6-7 years ago, when he was in his 50s (no family history of early onset AD) and I was in my late 40s.
One of the lessons that I learned was that with AD, nothing happens instantly. I found that everything didn't need to be addressed immediately. We had several years of good times left, and the diagnosis did not mean that our marriage was over, or that our kids had lost their Dad. In my case, our oldest had just turned 16 when DH was diagnosed and our youngest was only 10...and DH will get to see our oldest graduating from college this year with honors.
Your husband will be able to transition the business, and you will have time to learn how to do things that he handled. Use the early stage of his illness to learn as much as possible, to do home repairs, etc. He may do chores more slowly and may make some mistakes, but every chore that he does now is something that you won't be stuck doing yourself.
The most useful thing that we did, was to make an appointment with an elder lawyer. We spent an hour or so with him, asking every question we could think of about Medicare, title to property, beneficiaries, living wills, etc. We updated our Wills, DH gave me powers of attorney and he executed a Living Will. He also made appointments for medical checkups, and made sure all of his doctors knew his wishes and that they would not go against his wishes in the event of an emergency.
As his illness has progressed, I have ensured that DH has had regular dental and vision appointments against the day that he will not be able to communicate a problem (we are pretty much there now).
We obtained annual prescriptions of Aricept/Reminyl and then added Namenda. DH did have problems with the medications (intestinal problems). Eventually after a few years he stopped taking those medications, but studies do appear to show that they help slow the disease and improve functioning. We tried out some support groups, and I got on some mailing lists. I've used some of the resources that I found at the beginning, now that his illness has worsened.
I learned that stress adversely affected DH's disease, and that I needed to keep his life as calm as possible. Changes in his daily routines, even taking a vacation or going to a party with noise, also seemed to worsen his disease. DH had personality changes, which in his case made him passive and more even-tempered. DH developed a sweet tooth, and eats foods that he never appeared to like before. He has lost weight slowly, despite eating well. DH also has changed from a 5-hr a night person to a 10-11-hr a night sleeper/napper.
I have seen that there are many different types of AD, depending perhaps on which parts of the brain are affected. DH has become very nonverbal, but having trouble with words was one of his first symptoms. His Aunt in her late 80s has now been diagnosed. Her speech appears unaffected but she has no short-term memory at all. DH still has some short-term memory. DH knows he has AD, and has been as cooperative as possible (not trying to use the stove, drive the car, etc.) while other posters have reported experiences with patients who don't understand their disability.
In other words, stay calm. You have time. Get your legal ducks in a row, and research as much as you can. Life is a fatal disease, and if not AD it would eventually be something else. We all wish for long, healthy lives, but the reality is that something bad is going to happen someday. This is a disease without pain, which is a blessing for your husband at least. Let people help you, and research the resources available to you even if you don't need them yet.
AD is not a death sentence for your kids, either. There is at least a 50% chance that they do not carry the gene. Also, there are new developments in research all the time. When our kids reach an age where they may have to fear the disease, it appears very, very likely that there will either be a cure or medication tc control the disease.
My immediate reaction was to grieve the end of our world when DH was diagnosed. I look back and think that the first months after his diagnosis was the absolute worst time for us. After those months, it settles down to a new routine, and a new reality. My prayers are with you both.
You must be overwhelmed by what is coming at you. I knew that the two members of this Board whose husbands are/were affected would write to you. The good news is that it progresses slowly, can be slowed down even more by drugs, and you have plenty of time to get over the shock and make plans. The bad news is that it will inexorably get worse. But we do not get to choose our medical future or what disease we will finally die of. We have to make the best of it, whether it is leukemia (my sister in law) or cancer (my father) or MS (a very close friend) or Alzheimer's (my Mom).
You will se your husband deteriorate slowly, mentally - but he will not be in any physical pain.
Do what the two lovely ladies have suggested, find an Elder lawyer and get POA etc, follow doctor's orders, transition the business into someone else's hands, etc.
One option not mentioned yet is to get him into a trial of a new drug. One is coming to us from Scotland which they say has the power to undo some of the brain damage. It is supposed to be on sale in 5 years but trials are being done already.
Good luck, God bless you, and keep coming back for information, love and support.
In my case it was my mother who got AD. That was hard, but I am sure it is worse for those whose life partner gets it.
Thanks so much everyone. The last 2 days have been very hard and filled with lots of crying. Bruce is also 47, I forgot that info in my original post.
We've told the kids and some other close family. Everyone is devasted. But I know everyone will be supportive. Bruce's brother, who is 44, is considering being tested although he shows none of the signs that my husband did within the last 3 years or so. Our sons have decided for now not to be tested to see if they carry the gene. Our daughter hasn't decided. I think they are too young to be worrying about this now. None of them is even close to being married or having children so I feel like they can maybe wait until that time comes to make a decision whether they want to know or not.
One thing that's been hard is that we thought this AD issue was behind us. Back in the late 90's, I read somewhere about a test that could be done to see if you carry the gene that causes AD. (its turns out btw, that Dr Daniel Pollen who did the recent testing on my husband is someone who helped develope this test) Because of Bruce's family history, he decided at that time to be tested, but it was just a test ordered by our primary care doctor. The tests came back negative! So the last 3 years or so that we've been experiencing the memory loss and confusion, I kept telling my husband, you can't have AD, remember you were tested back in 1999. When we saw Dr Pollen at UMass last month I mentioned this and he looked at my husbands records. Apparently, not a full battery of testing was done then and obviously this time the complete testing was done and we have a diagnosis of EOAD. So the last 9 years I feel like I had a false sense of security and have been robbed!
A lot of you in your posts mention a lot of medical terms and such that I am not familiar with yet. I know I will become more familiar in the days and weeks to come as I want to learn as much as I can about this disease and what it will mean for my husband, me, and our children. I have been doing some research online, have ordered some books and Dr Pollen is working on putting us in touch with a doctor at Mass General in Boston regarding a trial for people under age 50 with EOAD. That sounds promising. We meet with him in 2 weeks and are making a list of questions and our children plan on going with us with their own questions. We have an appointment with our attorney next week. So much to do.
In an email from the doctor he mentions my husband has just been identified as carrying a pathogeneic PS1 mutation. I can't find anything on this at this time. Does anyone know what that term means?
I personally am still just feeling devastated. A huge sense of loss. I know I need to move past this soon and quit being so negative. We are high school sweethearts, and will be married 27 years tomorrow. He is my first and only love and I can't imagine living without him. I know I need to get back to living and stop thinking about the dying part. My chest feels so heavy, I cry on a dime and I feel hopeless! I need to quit planning the dying part and live the living part! I will find a way.
Thank you all again for your words of encouragement, your advice and your support. I appreciate knowing there are other people going through this with me.
I'll be praying for you. You need to be as encouraging as possible, and take it day by day. Yes, your life will change but no, not overnight. For now things will go on pretty much as they have been.
GREAT that you may be able to get him into a drug trial. Remember, they say a real cure - something that actually reverses the damage - is coming! Your kids will not have to worry about it, any more than we worry about getting polio, which was rampant in my childhood.
Remember too that you are fortunate to have a happy marriage for 27 years. Just before my mother got Dementia I lost my husband of 36 years not to death, but to another woman. I felt I had been hit with both barrels.
If you are having trouble sleeping or are too depressed to do your job, maybe a small dose of an antidepressant would help you just for a little while. I am not usually an advocate of drugs, but I used to take St John's Wort (a natural substance) when I was down. It would not hurt to discuss this matter with a family therapist. The thing is, YOU are going to have to be strong, capable and positive - for your children, for your husband, and for yourself.
In reading your post I had so many memories flooding back to me and my heart just breaks for you knowing what lies ahead for your family. We believe that in my husbands case that his was a sporadic situation because there was no history anywhere in his family. As for my boys, being tested was not an issue I wanted to push because they're so young and I guess I didn't want that hanging over them for the rest of their lives. Every family does it their own way. You mentioned being devastated with a huge sense of loss and crying all the time. You NEED to feel these things and give yourself the time to feel all of them and so do your children. Take things one day at a time and it sounds like you're getting things in order with your attorney. So much of what is to come is completely out of your control, so try to focus on the things you can do and give the rest to God. Hopefully you'll find as time passes and things settle a bit you will re-focus on living each day to the fullest with your sweet husband. Your marriage sounds a lot like mine in that you've been together a long time, (we met in college and celebrated 33 years last December) and that your family is very close. You'll be thankful for that in the years to come. I can't help you with the PSI mutation but I'm sure you'll research that and figure out what it all means. The trial sounds promising as there are many trials going on with some very encouraging results. I pray each day that a cure will happen in our lifetime and am working to help support that effort by raising funds for the Alzheimer's Assn for the Memory Walk in a few weeks. There is a book called the 36 Hour Day which I found very helpful and I referred to it often during my husbands illness. Try not to get too freaked out when reading about some of the things that "could" happen with your husband because each patient is different and my DH didn't follow all of the symptoms. I also want you to know that you will get through this with the love and support of those around you. You can handle everything that will come your way but allow yourself to mourn if that's what you need to do. Make sure you take care of you and know that there are people here, like me, who truly understand what you are going through and will be here to support you. Never in my wildest dreams did I think I'd be alone at 54 years young but I believe that God has a plan for all of us and we may not understand it, but it is our path and I, for one, have made it through by his graces. I will continue to pray for you and your beautiful family.
I have just finished reading Randy Pausch, "The Last Lecture". This book is an explaination of his "last lecture" at Carniage Mellon which you can find on the web. It is a guideline for living with dying. I highly recommend it for everybody to see and then to read.
Clinical trials are a way to reach into the future and be on the cutting edge of new advancements so go for it.
These girls have given you excellent advice. I just want to throw in that my thoughts and prayers are with you both.
I also understand what you're saying about feelings. I find myself telling people that DH had a "terminal disease" (which of course it actually is, but it also reflects the fact that in my heart I knew the diagnosis meant the end of our life as we had lived it. The Doctor's visits, legal visits, planning sessions, etc. will seem very overwhelming for the next few months.
I didn't want to make things worse for my husband by dumping my own fears and feelings on him, since he couldn't do anything about them and he had so many fears of his own. I just tried to reassure him that I'd take care of everything. He, in turn, tried to protect me from worrying about him. The result of all this protection towards each other can mean that neither partner is able to share his/her deepest feelings. This is our introduction to the lonliness of early onset AD, and is the beginning of the loss of our spouse's companionship and sharing that we've relied on throughout our marriages.
Think of those years that you lived believing you had dodged the AD bullet not as having been deceived, but as a gift. Your family was able to enjoy several years of life without the proverbial elephant in the living room.
DH did not have any family history. DH had been in a national AD research study, which took blood samples. The research center didn't tell us whether the genetic markers for AD showed up in DH's blood samples. It recommended that our kids not be tested for several reasons: (1) they are still discovering new markers, so a negative test today doesn't guarantee that there would still be a negative test in years to come; (2) it might change the way they chose to live their lives although research developments suggest that a cure can be found; (3) at this point, there is still a fear that such genetic testing could affect their ability to obtain jobs, life insurance, medical insurance or long term care insurance in the future. As you pointed out, though, this may change someday in the future when they are considering having their own families.
It may feel like everything needs to be done at once. I lived with lists. Every time I turned around, I thought of something else, from changing car titles and notifying the insurance company that DH was no longer a driver to researching Social Security disability or meeting with our kids' Guidance Counselors. Eventually it all becomes manageable. I also think we're just not wired to live with grief and pain indefinitely, so we learn to adjust.
DH was diagnosed in the Fall, and I would say it took at least six months before I discovered that most of the lists were taken care of, I was starting to sleep again, and that this diagnosis wasn't the immediate death sentence that both my DH and I had initially felt that it was.
I do NOT recommend that you get a really cute little puppy to distract your kids, brighten your life, and give your DH something to do (walk and care for the dog). That was one of my great ideas in the first few months after DH's diagnosis....now I'm taking care of a nice little dog but I'm a cat person.