My husband is 60 years old and has been recently diagnosed with EOAD. He is a clinical social worker in private practice. I have for sometime suspected EOAD. I am very concerned now about legal and liability issues related to his continuing work. His caseload has dwindled over the past few years. When I suggest that he take early retirement he says "what will I do if I don't work"...he is self employed so he is alone a lot. I know from casual conversations with former clients that I happen to know that they are aware of his "memory problems". I am having a very hard time encouraging him to retire now. Does anyone have any suggestions or ideas about how to encourage this process in a way that maintains his dignity and protects his liability? I want to get this done before he gets a referral of a client who is in trouble and he doesn't handle it correctly. Or before someone files a complaint with an insurance company or the State. Thank you in advance for any suggestions.
Hi Kathy I am glad you have found Joan's site, you will find many good people here and all struggling to stay afloat and do what is best for us and our loved ones with AD. My husband also has EAOD. he was also self employed. It is such a hard thing to convince them that working is not such a good idea anymore. My husband knew he had AD, so I convinced him to sell our home and we went on a wonderful 3 month vacation. Is there something that you and your spouse have always wanted to do? Does he know he has AD? I am sorry I can not be of more help. I am sure you will get many responses from others on this site. Good luck Kathy aka Northstar
Hi and welcome to our little community. My husband is 46 and has EOAD. He was also a social worker although not self-employed. I would suggest enlisting the help of the doctor who diagnosed him. Maybe between you and the doc, you can convince your husband.
I know with my husband, his doctor told him that he wouldn't be able to make him better (before we truly knew what he had) while he was under the stress of his job. This made Robert feel the out of work situation was temporary. Now, due to the alz meds, he is doing much better. He wants to return to work in some fashion. I keep putting him off by telling him that there is so much I think we should do with the kids while he is feeling this well. We have 2 kids at home, so right now, Robert is meeting the school buses, making sure homework gets done, etc.....
There's no easy or standard answer. I wish you luck.
Welcome to my website. You will find support, information, and understanding here. We are all on different stages of this AD journey, so you will have access to help from a variety of people who have "been there", "done that".
I agree with Leighanne about enlisting the help of the doctor in convincing your husband to stop working. You want him to do it voluntarily before his license gets pulled for a violation. However, in an effort to save his self-esteem and dignity, you and/or the doctor could suggest he begin writing articles for social work magazines or volunteer at a youth or senior center (or whatever age level he worked with as a social worker), helping with activities. Call the Alzheimer's Association (1800-272-3900), speak to one of their social workers, and ask for suggestions.
You and your husband may want to read "Alzheimer's From the Inside Out" by Richard Taylor, Ph.D. He was a practicing psychologist and psychology professor when he was diagnosed with Alzheimer's Disease about 6 or 7 years ago. The book is a collection of essays on how it feels to have AD; how he would like to be treated by doctors and family; and how he has tried to remain a useful and productive person in the midst of confusion and memory loss. It is informative, touching, and funny. Look on the left side of my website, scroll down to The Alzheimer Book Store, and click it on. It takes time for the page to load - scroll down to that book, click on the picture and read the summary. If you want purchase it, all you have to do is click the picture.
Please feel free to e-mail me anytime with questions or concerns. joan@thealzheimerspouse.com
I'm overwhelmed with the responses that I've received! You are all incredible and this website is just what I needed. I just got home from work. We have a 15 year old daughter and two grown children. Although I would love to quit work and travel for a bit, it doesn't seem like the right thing to do for our daughter. Your suggestions and strategies are helpful. Just "talking" with you has helped me to get refocused. I've been a bit of a maniac since the diagnose in late October...updating our wills, POA, financial affairs, etc. In the past week, I've just had a bit of a "meltdown"....I also haven't slept well so I'm really tired. I've been overwhelmed with feeling sad and angry and so very alone. I have a great support system of friends and family but the loss of the partnership is so hard.
Thank you all so much!! I'll be back....hope to head to bed early and get a good nights sleep. The sun WILL come out tomorrow!
My husband at 57 worked for a large organization. He started working with ADA right away when we realized something was very wrong. Now, 6 months later, he is on medical leave, but we all know that LT Disability will need to begin and he won't be able to go back to his job. He is very cognizant and capable, although, like a teenager I need to check up on him and his tasks without seeming to.
We worked with a psychologist. I can't retire so he is on his own. We worked together to set up a schedule in a planner. Daily he exercises, does some tasks like housecleaning, does something fun like reading or watching a movie, works on some sort of challenge (sudoku online, crossword puzzles, word search), posts to and reads online discussions of EOAD at the Alz Assn site, emails. He also does some 'projects' that are immediate needs but do not need to be repeated. The therapist said working on long term projects some each day would be great for him...and gets them off my plate as a bonus!
I emphasize that we have always been a team. We divided up tasks as each had the time in the past. Now as things change we are again doing a redistribution. This is not the first time in our married life we've needed ot do this and won't be the last.
Agreeing to not fight the determination he could no longer do his job was very difficult. We discussed that this is just like early retirement. We talked about how we know that he wants to do the best thing for his department (substitute 'clients') and if he voluntarily leaves THAT will be the best thing. He had CONTROL over this thing...he can choose to go out in style.
I have just started reading "Alzheimer's From the Inside Out", recommended by the leader of our support group, and I agree with Joan that it is well worth reading. My wife (with AD) and I are both in our 70's so I can't give any advice on quiting work. As she has gotten worse, I have taken over more of the household chores, so that now she just sits in the chair next to my desk doing nothing. It's very important to find a support group in your area - check with the local Alzheimer's Association - particularly if your family is scattered, as mine is.
I wish I could express myself as well as some of the rest of you. Your comments have really helped me in dealing with a very difficult situation. As some have said, this is really "Hell". My wife and I had such a wonderful life together that I sometimes said that we would have to pay for it at the end. I didn't count on such a large payment!!!!
Sid said something to me last night similar to your "payment" comment. "What have I ever done in my life to deserve this Hell?" No matter how down I get or how much pain I am in, I feel, and have always felt from the very beginning, that we were not "singled out". The disease happens to such a wide variety of people with nothing in common - old, too young (EOAD), rich, poor, famous, infamous, not known at all. It's not a punishment or payback for anything. It just is. And we have to take comfort from each other.
Concerning the book "Alzheimer's From the Inside Out" - Sid and I heard Richard Taylor speak at a conference. Sid was mesmerized. He said that Richard spoke every word that Sid thought about the disease and how it affected him.
Kathy, I can understand your issue. My husband, a retired naval officer decided he wanted to be a contractor - went to school passed the test, got incorporated, insurance, etc. That was a few years ago. He did real well for several years. While he is a general contractor, he basically works alone doing the the work himself - remodeling kitchens and bathrooms, changing plumbing, doing electrical work. All of these are legal for him to do.
All of his customers love him and his work comes from word of mouth. But two years ago, right after he got his diagnosis his work began to suffer and we had several jobs that he didn't get paid for - in the thousands, a couple that he had to do over - major bathroom redo. He doesn't have to work as we have an adequate income from SS and retirement.
After the last bad job, I was so upset. I had been trying to get him to stop work and all that did was casue great and long arguments. I tried to be tactful, but nothing worked. The day he did the last bad job, I was so upset, I was afraid he was going to get hurt, I was afraid he was going to hurt someone, and I was afraid we would get sued. Even tho we have insurance, I don't need that in my life. I called the hotline from the Alzheimers website. I was close to being hysterical and the lady was so calm and understand and patient with me. She told me that I had to get his contractor's license. I told her that I could never do that because he had worked so hard for it and she reminded me of how serious the risks are to other people. After I hung up, I thought about it for a couple of days - trying to figure out the right strategy to tell him.
When he came home, I made him stand a foot away from me and look me in the eye - looking at me doesn't happen much anymore. I told him my concens, what the hotline lady said and that with the tests that I had on paper I could have his license at least suspended. I told him that I wanted him to think about how he wanted to end his career - in disgrace with his license taken away from him - or would he rather decide when and how HE wanted to stop. He looked at me right in my eyes for a few seconds = I did not know if the roof was going to come off or not. But when he answered me, he had a twinkle in his eye and said "you would do that too, I know you would".
He slowed down a bit, but my goal was to get him to stop, more arguments a few more mistakes and he has decided to retire. I hear him turning down jobs on the phone. He is telling people he needs to slow down. He only has MCI and functions 99% of the time well, but he does have safety issues regarding the work he does.
He looks so good on the outside and most of the time he does beautiful work, but when he gets to that spot in his brain that isn't working, it isn't pretty.
So I can understand your concern. I thought somehow that I would have to make him quit myself. When I realized I had some leverage, it made the situation better for me - I didn't feel as frantic or helpless. The doctor didn't help as she thought it was good that he kept himself busy. I don't think that doctors sitting in their offices realize the world their patients live in.
Now, my next task is driving. He is a better driver than I am except that 1% when he gets startled and stops where ever he is - traffic racing by. He is like a deer in the headlights and he doesn't realize that there is a time gap there where we could get hit while he comes to his senses.
I am retired now, but my career was as a licensed Mental Health Counselor. Often since I have been retired, before this monster came to live with us, I felt guilty that I wasn't doing more with the education and training I have had over the years. Little did I know that God was preparing me for the real career that he knew I would have to face. But, we all bring our own particular talents to this task and do the best we can. Sorry this is so long. Good luck.