As a new member here I find dozens of issues cropping up, but one of the most troublesome right now for me is how I can make sure my still interested, still functional husband can continue to see his friends, with or without me. He has been retired for nearly 15 years and has been in the habit of going to lunch with various friends most days of the week. We are in Florida during the winter, where lunch spots are pretty close to our home and friends are generally able and willing to pick him up. When we return to Ohio in May it will be a very different situation. We don't live as close to his buddies and the restaurants they frequent are often halfway between their homes. It will be a real imposition to ask someone to drive him to and from. Since he is still very able to be left alone, I treasure the one or two days a week I can do things outside the house and don't want to give that up until I have to. Have any of you dealt with this? He isn't currently driving, but is itching to do it, and wants to take a driver's test when we are in Ohio. I can't honestly say that he'd fail it, either. I don't want to see him become a zombie, and he watches far too much tv as it is. Another issue is socializing with friends who don't know about his AD. He comes across a bit like someone with ADHD in a group, but isn't offensive or mean. Many of our friends would continue to have an occasional dinner with us, and I find myself reluctant to say to someone "Oh by the way, Jim has AD." I don't expect a thriving social life, but until he isn't able to enjoy such things I want him to do them. And, he really has no idea of the true DX, even though the neuro told him. He hears what he wants to. I can't say to him, you are slowly dying from a brain-rotting disease, sweetheart. He feels great and thinks he is in fine shape. How do I handle this?
linda220, its a very difficult call to know what to do to continue your DH social scene. if it were me, and there are very GOOD friends of his that would understand, i would tell them honest upfront what the situation is. they will be able to tolerate the behavior in a more friendly sympathetic way i think knowing whats wrong with him. even early stages they can be high functioning but there are acute telltale signs. rather than have the guys wondering whats wrong, they would know and could be of a support to him and help and encourage where hes deficient. but be prepared some wont want the responsibility of knowing what is in store down the road and many of us find even close friends/relatives run for the hills, and just cant stand to be around AD. there are many discussions on this topic. and forging a closer bond now may help him retain a couple of the very close ones later when he needs stimulation. as far as the driving they also can look high functioning, and many drs will say they can. but i think the signs are already there. hes been told by a neurologist and is unable to absorb the info. its called anosognosia and the 'unawareness' that many of our spouses go thru without ability to grasp reality. for me, if he wasnt driving i would not encourage it again. make up fiblets to give as to when you could get a driving test, whatever. there are also many liabilities associated with a dementia diagnosis 'on file' medically. many insurances companies are not tolerant if they arent made aware of this and have the ability to chose whether to offer coverage or not to the afflicted individual policyholder. he will continue to think he is fine and in good shape even when its quite obvious to others including you. its part of the lack of awareness. at any rate, its up to each of us to dig deep within and find how to come up with the game plan on how to make their lives as productive and happy as we can. not always easy either. my best, i am sure, others will have more input. divvi
Linda220 - the moving back on forth from homes is going to be hard on your husband. You are going to make the decision where to stay for the duration of the disease sooner rather than later. I was reading in you initial post when moving from Florida to Ohio last fall then back to Florida you noticed the change. Change is hard on them. You will learn that routine is very important including the same surroundings. With the description of the difference between the two, I would think Florida has more pros.
I know it is hard to give up your dream. We live in an RV where we travel to different parks I work in (use to be both of us but he can no longer work). The reason is works is because our 'home' environment does not change - only outside. Even though you have gone between the two homes for years, his memory is failing and the change will probably cause him to loose ground.
AS to the friends - tell them. If they are true friends, for a while anyway, it will help them to understand his change in behavior. They might even suspect it anyway.
As for what to tell your husband many here tell them they have something wrong with their brain that is causing the problem. I forget the exact wording they use - sure they will be along to share it. My husband has known since his diagnosis at 59 what is wrong with him since his dad, paternal grandmother, paternal aunt and uncle had it, and his younger sister has it.
Linda...after my dh was told he had alzheimers he would continue to say, no matter how bad he got, "I really don't think I'm that bad." And, I would always reply ...."No, you could be a lot worse and at least you don't have any pain"....Personally, I don't see any great advantage to making a big deal out of it with them (your mate)...unless they ask questions. But, I never tried to hide his condition from friends and when we would meet strangers someone might ask me if he had Alzheimers and I always said yes....I got mostly the same answer from these people..."I thought so." Many people recognize the condition...more then you might think.
Linda220--I faced the problems you have described in your post re social activities. I agree with telling the people you are closest with. In my experience, my husband's coworkers and his close friends noticed that something was wrong with him well before I did. When informed of this many years later, they said "we thought he had memory loss due to aging".
As a rule, I have observed that women tend to support a friend with AD much longer than male buddies do. It's just that women can still--for example--go out to lunch and/or shopping or have their hair or nails done, well into the disease. Many male activities (going to the gym/playing golf/playing cards, etc.) get to be too complex for someone with dementia relatively early on. Because of that, (and the fact that Steve has EOAD and most friends were still working), his own social life dropped off significantly at dx. Consequently, I sent him to an adult day program while he was in the early stage. He thought he was volunteering, and it bridged the gap until several years later when I could start to bring help into the home. That way, I was able to have some respite time on a continual basis for about 5 years until I moved him to an ALF.
You may think it's too early for an adult day program--practically every caregiver says that--but it did save my sanity. I just had to be creative in order to get him there and to keep him attending.
I completely agree with the suggestions to tell your friends. Those who can't handle it will leave, and there's nothing you can do about it. But those who can, will be of great support to both of you for as long as they are able.
Our situation was different because we had just moved to Florida when we got the diagnosis ( had been having problems up North for a few years), so we had to make new friends. We never sustained any new friendships until we joined an Early Stage Alzheimer's Group and made friends with couples who shared our situation. It was great for all of us, because we did not have to be “on guard” with each other. Everyone was going through the same thing, and we understood whatever went on with our husbands. We socialized together as couples; the wives got together alone as friends; and we formed a “game day” for the husbands, taking turns at each other’s houses once a week for the guys to play Rumikub or Dominoes. The guys loved it because they could be themselves with each other, and didn’t have to try to hide their problems. When each man was no longer able to play, he went on to Day Care. Although I no longer go to the Support Group, I remain friends with some of the women, and Sid still has his dominoes group here at my house (he’s too physically disabled to go to others’ houses) once a week. And he has been attending Day Care for over a year – he has advanced to the level that he fits right into the Day Care and loves it.
I would suggest that you contact the Alzheimer’s Association in your area and find out if there are any Early Stage Groups that cater mostly to couples. It is there you will find understanding friends.
I would also ditto what was said about making a decision as to living in one place. The advantage of Florida is the weather. If your husband is physically able, he will not be housebound during the winter. As long as Sid was able, we went to outdoor concerts and events right through the winter. He sat out at the pool all year round.
I have brought up an old discussion on this for you to read, and the blog that it relates to is: http://www.thealzheimerspouse.com/notreadyfordaycare.htm
Linda 220---two suggestions that worked for our situation, may not work for yours. When my DH was able to go out to restaurants, often I would drive him to the restaurant to meet friends, but then they would drive him home. His friends were happy to do so! Then, when it became too difficult to go out, one time he refused to get in the car with his "friends", his friends would pick up sandwiches, pizza, whatever and come over for lunch. By that time, my husband couldn't plan these "lunch dates" himself, but I would try to plan one about once every other week. There was a core group of about 20 guys who participated, but no more than 3 came at a time so they could sit at our breakfast table. Finally, when I realized that this would not continue, I had a pizza party for my husband's birthday and invited those 20 guys and my DH made a brief appearance and literally walked around the house telling them all "thank you". Who knows what he really understood but his friends appreciated the chance to say "goodbye".
I so appreciate all your comments and Joan, I will read the other discussion. The part about staying in one place makes so much sense, but will be the most difficult for us. Florida obviously has the advantage of weather and more people Jim's age (and condition, too) but our family is mostly in Ohio, along with many closer friends. He loves coming here in the winter; then, about the middle of March he starts wondering what's going on in Ohio and whether he's missing something. I know as the AD progresses he won't care as much. We will not sell either house because God willing, some day I'll be able to choose where I'd like to be. So, I guess it's take things as they come. I'm happy to have all the suggestions for socializing him. Texasmom, I enjoyed reading about your DH's friends and their lunches. I can certainly see doing something like that for mine. Thanks, all.
Linda220, also check out the local branch of the AFA, Alzheimer's Foundation of America, for sites near you at www.alzfdn.org. The Alzheimer's Association did not provide what I was looking for after my wife was diagnosed with EOAD. She was still very verbal and they had zero groups for people with early stage AD. Also, all of their caregiver groups met monthly. The AFA website led me to LIAF, the Long Island Alzheimer's Foundation, which not only provided support groups for people in early stages on a weekly basis,but also had groups solely designed for spouse caregivers that were meeting at the same time. (Clare no longer attends a support group at LIAF, but now attends their day care program which is based on a socialization model, and Clare has made a few good friends there.)