Last week in the space of 7 days, I was told because it became known I was diagnosed with early-onset ALZ/Dementia that I was to cease volunteer work in my church, and a service organization which I am a member with 27 years of service. My Neuro told me after 35 mos it was time to add Namenda to my list of meds, because I did not do as well on the Memory Tests as I did 6 mos ago. We have long since diagnosis been carrying on a discussion about driving. I first brought the subject up when I was diagnosed, and my Neuro told me I was the first patient that has ever initiated the conversation of driving. My neuro talked to my wife, who also told her she had no compunction about my driving locally. Pick up my tweenage daughter from school, go to church, grocery store etc. My choice is to not drive outside of our county.
I was forced to retire a little more than 3 yrs ago when I was diagnosed and my volunteer work, service club work, and my daily errands, grocery store, stop in for breakfast at a local fast food restaurant, and bank. These are the things that have kept me connected. I've never denied when I've forgot to do something, be somewhere, or couldn't find the right words, and admit to all of my mistakes. I've only had one ticket while driving and that was 30 yrs ago, and my last accident, I was rear ended by someone who had no drivers license or insurance, and not legally in the country, and that was over 20 yrs ago.
I've always recognized things that are outside my wheelhouse. I voluntarily stopped participating in some service programs that I could no longer do credibly. I still know the tenants of our faith, and understand what is required as an usher. No criticism at this point, other than some people know I have Dementia. I am afraid if these last few volunteer activities cease, the rocket will be taking off for the moon and I'll decline very fast. I don't know what to do. Any suggestions. All are welcome.
Yes it was the Pastor. Unfortunately, one does as the Pastor decides in our faith. I don't believe he's singling me out in a discriminatory way. Our parish has well over 20000 members, I respect his opinion, these were the last things I've had to hold on to, outside of my family. He has to think of the big picture and I accept that. I am now trying to come up with a letter of resignation to the service club I am a member of.
(I can't help but wonder at the seeming ignorance and intolerance in your community, is there nothing you can participate in at a reduced capacity? I know of one dear lady who was allowed to attend her bridge club long after she could participate purely as a social outlet, as her alzheimer's became more advanced she came with her caregiver)
Have you asked for advice from your local Alzheimer's Association? Often they have activities and workshops available.
The driving thing is normally a difficult thing for people to do, and someone has to be the "bad guy" to take away the keys. Driving familiar paths, while they are good for you to do, still could endanger those who also drive. My mother was someone who didn't give in "nicely" when I took away the keys from her and explained why it wasn't wise for her to continue to drive. She has now been away from the wheel for more than 3 years and it has been rugged. Her friends had long ago quit riding with her because of her endangerment to them and others even though she saw nothing wrong with her driving. She had had no accidents, but it was a matter of time. The "if only I should have/could have" would not have mattered once she would have hurt or killed someone, or wrecked the car she loved. She has said over and over "I don't care" when I would point out what was just waiting to happen. She also was becoming someone whom her beloved pets feared because they could sense the change in her personality. I took her animals away from her and have had them for 3 years and they are totally different in their personalities than they were initially. They have learned how I do things and they are now not timid, hiding, afraid. Animals and children sense things that adults don't. You cannot fool them.
It has been a very hard 3 years for me and I have learned things from/about my mother that I wondered about but were kept from me by family members. Now they are speaking out and saying that they "lost" my mom years ago. I had the same sensations about the same time that they did, and I was in another state. NONE of the family members have come to see my mom since I brought her to live where I live. I keep them up to date, have her talk to them about twice a month on the phone so that they can hear her and know that she is alive and well. I have taken her to see them about every six months or so since I moved her one state over from the Family. We don't live on the Moon, but you would think that we do from lack of interest. They simply hear that she isn't the person they remembered when she was at her best, and she hasn't been at her best in many years--long before I got her. I was the only person willing to take her on and stepped up to the plate WILLINGLY. It is tough but I have hung in there so far. I intend to see it through. No one has blamed me for anything other than not doing some things that should have been done long before now--like joining a support group for MYSELF. They are urging me to go further and dispose of things that she will never need again--9 closets of clothing, empty out two storage units that contain her personal possessions that she doesn't even ask about any more. It took me two years to sell the house and sell the furniture and appliances. They were just as upset over how long it took me to do those things as I was because they could see how difficult it was for me to try to do it and be thwarted by unseen forces that kept getting in the way.
Continue to do the right thing by getting guidance from dementia groups and know that you might be in it for a long haul if you are considered "high functioning". This will be difficult not only for you, but your family as well. You sound willing to do what is right for others. Don't forget yourself as well. Stay on this site and let us know how you are doing, and keep a journal of your progression. It will help others see it from your prospective and it will be a document that your family will keep long after you can no longer communicate with them like you would like to do. The spirit is willing, but the flesh will become weak. Hang tough!
Thank you for the very thoughtful message you sent to me. I have had the same Neuro Dr. for 14 yrs, I first met her when she was a Fellow at a major metropolitan hospital where I was diagnosed with Muscular Dystrophy at 43yrs old. When I was diagnosed three years ago, she told me I was the first patient that ever brought up driving with her, in her twenty yrs of practice. Yes, I have had some decline, not enough though that she feels like she has to say STOP DRIVING. My DW and adult children are always conscious of how I am driving, yes they've once or twice commented on maybe the way I pulled in to a parking space, or why do I always drive at the speed limit while other people are going 5-10mph faster than I am.
We are all in agreement, DW, and my three adult children, they won't hesitate to speak up if they think I'm not safe to myself or others. My Neuro Dr, knows if I haven't put the car keys away, and her exam of me says I'm over the cliff she'll tell me and I've agreed, I'll hang up the keys, no qualms about it. I always bring up the question at each appointment, should I pull the plug on driving, her answer last week, was not yet, but you are close to the finish line as far as driving is concerned. Usually she says, "this is a hotly debated issue with patients." I have also established confidence with her, she knows if she recommends a plan, I follow it. Yes, there have been a few times where I've said. I don't feel like I should be driving, and my DW or adult children will tend to the driving.
I have chosen not to drive outside of the county I live in, because, I'm uncomfortable with the idea of being far from home, and having some kind of incident, ie getting lost. We live in a major metro area, where it can take 2-2.5 hrs just to go 15-20 miles. I want to be accessible to my family, if I need their help. My DW has a tracking program on her Iphone so that she can locate me if I'm in trouble. We are a team that are one. No cracks in this foundation. Thank you for giving me the opportunity to fill in some blanks. I guess I'm just disappointed that I have to give up things that mean so much to me, but I have to do what's best for those around me.
Tonight is Forgetful Friends a Caregiver & we Patients Support Group, that allows the patients, to come in and have a voice. There are a lot of good advocates with great advice to share. I am sure they will have a couple of suggestions to share with me. One of my adult children is coming with me, my DW has to work so she won't be able to go with me.
I am now finishing the message to you that I started, last night we had our local Forgetful Friends Mtg sponsored by the ALZ Organization. Our oldest who is 22 went with me, he doesn't like to talk much, but he is learning a lot. I was surprised when I didn't have to twist his arm to get him to come along a couple of months ago. He and my DW are going to a Caregivers only conference on Saturday. Our second oldest son won't be back from college until the middle of next week. Finals week started yesterday.
I would say that in the last six months I have slipped from Highly Functional to above average in function but there has been some definite movement in my decline in the last six months, Thus Namenda being added to the meds list.
My DW asked me to keep a journal to bring to my April Neuro appointment, I started keeping one for about three weeks, and then kept forgetting about it. Reading your posting has been a real jolt of pleasure knowing someone really thought about my post, and had lots of good ideas to share. Please you keep posting. Private messaging and Hug functions have not appeared, so a HUG to you. You may a difference in my day. John
I would ask my doctor if he thought quantity without quality would be the way he choose to live. Because I personally want to live my life to the fullest until I am done living.
Keep doing what you love, it is worth it.
You seem to be a remarkable person in the way you understand your illness and future problems, I hope that you continue to do the things you enjoy whilst you can do them, that you enjoy your family and the support they offer. Very best wishes to you, keep going with everything you can.
The Pastor of our parish, has significant personal family experience dealing with Dementias. I'll be 60 in two months, he may be 4-5 yrs older than me. We have over 20000 parishioners in our parish, with many suffering from dementia. I wanted to answer as to was he not speaking from a well informed position. The answer is, no he's not picking on me, but he has to be on the lookout for problems that could be created by someone with Dementia.
I found out 5 mos after I was diagnosed two things the doctors never told me, 1) you are terminally ill, by every medical definition, 2) Your diagnosis legally states, you are no longer mentally competent. I was informed of this by my case manager at the Social Security Office.
I have had the same Neuro Dr. for 14 yrs, I first met her when she was a Fellow at a major metropolitan hospital where I was diagnosed with Muscular Dystrophy at 43yrs old. When I was diagnosed three years ago, she told me I was the first patient that ever brought up driving with her, in her twenty yrs of practice. Yes, I have had some decline, not enough though that she feels like she has to say STOP DRIVING. My DW and adult children are always conscious of how I am driving, yes they've once or twice commented on maybe the way I pulled in to a parking space, or why do I always drive at the speed limit while other people are going 5-10mph faster than I am.
We are all in agreement, DW, and my three adult children, they won't hesitate to speak up if they think I'm not safe to myself or others. My Neuro Dr, knows if I haven't put the car keys away, and her exam of me says I'm over the cliff she'll tell me and I've agreed, I'll hang up the keys, no qualms about it. I always bring up the question at each appointment, should I pull the plug on driving, her answer last week, was not yet, but you are close to the finish line as far as driving is concerned. Usually she says, "this is a hotly debated issue with patients." I have also established confidence with her, she knows if she recommends a plan, I follow it. Yes, there have been a few times where I've said. I don't feel like I should be driving, and my DW or adult children will tend to the driving.
I have chosen not to drive outside of the county I live in, because, I'm uncomfortable with the idea of being far from home, and having some kind of incident, ie getting lost. We live in a major metro area, where it can take 2-2.5 hrs just to go 15-20 miles. I want to be accessible to my family, if I need their help. My DW has a tracking program on her Iphone so that she can locate me if I'm in trouble. We are a team that are one. No cracks in this foundation. Thank you for giving me the opportunity to fill in some blanks. I guess I'm just disappointed that I have to give up things that mean so much to me, but I have to do whats best for those around me.
God Bless you all.
I'd likely find an advocate, as another poster suggested, and explore options. Certainly, there are options. That is my philosophy. I'm not one to just accept something that I find unacceptable. You still sound quite vital, alert and motivated. There are plenty of places that need people with those traits. We all try to serve in the capacity that we can.
I would also explore the driving though. While your driving may currently be fine, it might not be either. I'm not sure why limiting your driving to inside your county is somehow helpful or safer. I'm not sure I follow that. The risks associated with driving with cognitive decline, aren't limited to the driver being unfamiliar with their surroundings, roads, direction, etc. The risks also include, hand eye coordination, reaction time, depth perception and judgment. Perhaps, if alternate driving was arranged for you, your volunteer work and services could continue, if that is where the concern is centered.
I wish you all the best. Please update us if you can. I would welcome any post from you as you have such a unique and direct perspective, I'm sure that all the members here would love to see more from you as well.
Dont think if you cant voluteer you have nothing to give... Give a smile as you give them the weekly magaizine for the church.
Try adult day care, hospital volunteering, local library volunteer, garden volunetter. VA, wva, outpatient ward, botonical gardens,NODA = Nobody Dies Alone.
At the very least, if it's any consolation at all, your church's response to the news of your diagnosis may be regarded as a text book example of what not to do.
I feel outraged for you. More constructively, this sounds like a prime opportunity to get involved in public education around dementia. My first step in your place would be to go to https://www.alz.org and join their fight.
My wife is eight years into Alzheimer's so I've built up some experience, as she is still living at home, bed-bound but relating well. I would make the following suggestions:
1. Read Wendy Mitchell's book, "Somebody I Used to Know" (Second Edition--Bloomsbury, 2019). Wendy has Early Onset Dementia, but can still do an amazing number of things. Just type "Wendy Mitchell" into Google, and you will find her blog.
2. You are not mentally incompetent simply because you have dementia. I do not know the position in the USA, but certainly here in Great Britain you must be certified as mentally competent; and simply having dementia does not mean you are mentally incompetent.
3. Your approach to driving and self-awareness of your ability to drive is very impressive. Your family and friends will also advise you, but it appears to me that you know where you can and cannot go safely. Driving keeps you independent; and as long as you do not become lost, you are doing well. You might get a SatNav (Satelittle Navigation System) in the car to guide you home or to where you wish to go, if you do not already have one. Being 81 myself and having driven from some 65 years, I too find driving an important skill. I do find you have to be aware of weather conditions (especially heavy rain, snow, ice, etc.), and driving at night does mean one needs to drive slower and more cautiously.
4. As you are a person of faith, you might find of value Dr Jennifer Bute's book, "Dementia from the Inside: A Doctor's Personal Journey of Hope" (published in 2018 by SPCK-Society for Promoting Christian Knowledge). She points out, from her own experience of Early Onset Dementia, that: "(1) There is always a reason why a person is behaving in a particular way; (2) When facts are forgotten, feelings remain; and (3) Familiar patterns of behaviour continue." (p. 106) Her website: www.glorousopportunity.org is very good with many short videos. She is very convincing that as cognitive (i.e. thinking) ability declines, spiritual awareness and insights increase.
5. Find some new friends (and perhaps a new church if that is right in prayer?) where your competence and insights are appreciated. Don't stop all your volunteering activity because ill-informed people are afraid to trust you. Simply find the activities that are right for you. For example, you may be able to be of great help to many others in the early stages of dementia.
6. It says nothing about dementia, but I find C. S. Lewis's book, "The Four Loves" a good guide to life. The four loves are: friendship, affection, charity and Eros (being the state of being in love with or without a sexual side). It's easy to remember as FACE; and you need to add an "S" to that for "Slowly," so that you can move ahead with what the Lord has for you now.
7. The Bible translation called "The Message" is very good; and you might find it a good translation to read.
Go to it! Keep living with purpose! With my prayers and hope for your future.
Second...It boggles my mind that a CHURCH would want you to discontinue your volunteer work. I am sure if I thought about it there are many passages that would indicate that this is not a very Christian attitude for them to take. But that aside..
Are there other areas in the Church that you could continue volunteering? You do not mention what you do but if the Church administration is concerned about safety both yours as well as the parishioners I am sure that there are other things to do.
Next..they are not the only ones that need volunteers. Here are a few off the top of my head.
Hospice. I volunteer at the Hospice that helped me care for my Husband. There are all sorts of things to do. From Gardening to office work, in the In Patient Unit, to visiting people in homes or facilities. In homes you might just sit and talk or take someone for a walk or fold laundry. In the In Patient Unit you might sit and talk, go get a snack, or help feed someone. LOADS of office stuff.
Your local hospital might need someone to walk/wheel a patient to a test, or calm someone waiting.
Your local animal shelter needs someone to help walk dogs, clean cages, play with puppies and kittens.
Your local school needs volunteers to hep teachers with some projects.
You get paid as a crossing guard, then again ya gotta stand in the snow, the rain and heat!
EDUCATE! When I was a kid no one dared say the word cancer...it was a "death sentence" with treatments now we see cures or the life span has greatly improved, in the 80's it was HIV people thought you could catch it by being near someone with it, or touching them now with treatments and medications life span is amazing. Dementia is one thing no one wants to be diagnosed with because at this point we are where we were 60+ years ago with cancer and 30+ years ago with HIV. We might be able to slow it but not cure it.
Bottom line people live fulfilling lives with cancer, with HIV with Dementia we must show "them" that people with dementia can still carry on everyday activities.
One last thought...Contact Alzheimer's Association and find out if they have any volunteer positions that would be a good fit. Also ask if there are any Support Groups FOR people with Dementia, it might be good to talk to others that have walked in your shoes.
Perhaps there is a place for you and several men in your church or homes where you can gather weekly to pray together, read some bible verses, share coffee, and life.
After caring for my mother in law with dementia, and noticing memory decline in myself and my husband, I began to pray that I will never forget God! He won’t forget me— or you! If your pastor will not let you usher at church, he certainly cannot stop you from praying for the church, and that is very good.
I loved the book “Second Forgetting: remembering the power of the gospel during Alzheimer’s disease” by Dr. Benjamin Mast.
I wish you and your wife joy in your journey.
I want to share a story with you about a wonderful young woman who I am so pleased to know and grateful to be friends with.
She is legally visually impaired from birth, has some ability to see, enough to function fairly well, but also has a slight case of cerebral palsy and has not and will not ever be able to drive.
With that being said, she has a great life and fantastically positive and incredible spirit for work, volunteering and service. Her main work is as a part-time cashier and customer service person in a large local store and is also a pet sitter. She also volunteers her time to work in a leadership position with pet rescue organizations in her spare time, which is her passion. My friend is also involved in a local book club (she “ reads” books through an online book reader and is a voracious reader).
She is married now, less than a year, but her husband has a very demanding full time corporate job and simply cannot daily drive her where/when she needs to go.
So how does my friend get to work and do all these things? She KNOWS how to build a network! She has reached out and is building a continual incredible network of personal friendships with others (including me). She invites them to breakfast or lunch, knowing they will need to come and pick her up, which I think is wonderful! Her friends and family are very willing to spend time with this inspiring woman and drive her where / when she needs to go. But often times, if there is no other availability, she will walk, or bike to get where she needs, or even call a ride service.
But my friend hasn’t stopped there. We discussed her great writing skills that she has shown on some of the pet rescue sites. So she decided to sign up for a blogging class two months ago, just completed the course, and has just set up her first blog, on which she plans write stories and sell products to help earn extra money for her causes as well as herself.
The most important thing I have learned from my friend is that she doesn’t sit around and worry or complain about her situation and never stops learning. She is an ACTION taker and DOER! She simply has accepted her situation for what it is and learns how to navigate around the difficulties. My friend is such a delight and has such a positive outlook and influence that everyone WANTS to be around her and also to help her. And she is not afraid to ask for help or to accept it!
I see great things in her future because because she is willing to accept and embrace change, be positive, give, serve and love right where she is.
i am truly inspired by her and thought this story may help you (and others) think of some ways you could navigate through this part of the journey of your life, as well.
Blessings and prayers to you for renewed strength, ability, and new ideas for ways to effectively move through this time in your life’s journey. Stay close to God and ask for His help in navigating - it’s His specialty and passion!
Sorry, I wasn't going to debate theology but I'm seriously incensed about this, although there may come a time when you are unable in my opinion cutting you off in anticipation of that is just wrong. And there are plenty of opportunities for service in the church that even young children can perform, especially in a congregation as large as yours. WWJD
It's just that I have a friend who seen a psychiatrist and was put on psychotropic medications and started having memory issues.
My mom is dying and it is tempting for me to see a psychiatrist but it is also normal to feel pain so why numb up emotions with good drugs under the guise of coping.
Make a plan of when you stop certain things in life - take a milestone that will tell you it is time to step back - as an example ... the first time you lose your way when driving to church maybe the time to stop driving
You write a such clear letter so it should be some time yet & you seem to have a lot to give so I hope you can continue
Let me tell a small story ... I took a lady for an assessment & when asked what today's date was she said 'I live in a retirement home where every day is the same, they decorate for holidays so I know when they are, I am nearly blind so don't read & the tv news is depressing .... I really have no need to know what the date is today' [I always thought this was a good answer]
1. Have your doctor write a letter to your pastor stating your competence. My gosh, I have seen teachers who are far less articulate than you be allowed to work.
2. Consider volunteering at a senior day care facility. You would be an invaluable asset.
Please keep fighting for what is right, fair and just. You are an inspiration.
The stigma associated with dementia is a big problem, which is ironic because your brain stops developing at age 25 and it's downhill from there (slowly, but downhill just the same) : ) It's wisdom and experience that make older people 'smarter' than 25 year-olds. You have plenty more to give and plenty more living to do. Adapt and adjust as you go and encourage those around you to do the same.
Get yourself a smart phone, if you don't already have one. For your future safety, make sure your location is ON and your wife can see where you are. Become an expert Uber and Lyft user. At some point, driving will become unsafe and if you already know that giving up your car doesn't have to hold you back, you'll give it up more easily. Tally up what you spend on upkeep, gas, insurance. you'll find that you've got a sizable amount of money to spend on Uber rides without making a dent in your current budget. And you very well may enjoy being chauffeured around. Go EVERYWHERE, picking up your daughter, out to the McDonalds... anywhere you would go in your car.
Dementia is a tough diagnosis, but you're already addressing the most important things you can do to stave it off: staying socially involved and keeping physically active. Keep at it! Don't let the turkeys get you down.
I'm truly sorry for what you're having to deal with. You seem like a remarkable person and I pray God leads you distinctly in your next season of life. You sound like a fighter, and reasonable person. I truly believe that when one door closes another one opens. Look for that other door and don't give up.
God bless you.💕
1. Dad will be 102 next week. Not without his issues, primarily deafness, but he is alert, active and has volunteered for the local meals on wheels for at least 25 if not 30 years. At one point when he was probably 90+ someone realized he was 90+ and they decided...with no policy...to simply inform him he could no longer drive/deliver meals, although he could be the hopper and go with someone else driving and take the meals to the door. They were concerned about his reaction but needed to be more concerned about MINE LOL. I found it discriminatory and baseless as he too had an excellent driving record and was very dedicated and loyal. Had it been me, I would have had some choice words for them and departed. He continues to this day just helping at the set-up point. 2. We have mom, now 96 with dementia. Mom had volunteered almost the same amount of time as dad but at a resale shop benefitting the local hospice. She called it work. But with her situation I heard that she was clueless with some tasks like wrapping things up; that she re-arranged displays that had been carefully generated, and worst, would tell people prices that were not accurate. So they wanted to get rid of her, have me explain (!). Or they would tell her, and then have punch and cookies to wish her well on her way out the door! I quickly refused not wanting to be the heavy, but understanding their duties and responsibilities. In the end mom stayed but they were kind and patient and oversaw things more. At the time, the dementia was not too far along. There was also a time when they made sure to remind her the day prior to her shift to not come in because they were remodeling...and still she forgot, dad dropped her off. She sensed the cold-shoulder and how unwanted she was, so when their backs were turned, out she went. There was a shopping strip the store was in. They became alarmed when she was gone and they couldn't see her/find her. They called me at work, I got the call at home, and felt helpless beyond calling the police. I was fearful of notifying dad who has some heart health history. It was a pretty frantic and stressful hour, but by time I got to the store, about 10 minutes at most away, two officers were on the scene, and one had wandered down to the CVS where she was shopping:-) She was absolutely fine...but her perception of time was off. She was going to wait for dad to pick her up but didn't realize that wouldn't be for hours. In the end she continued on until the shop closed for other reasons. And still for a while she'd still know it was Weds and get dressed and ready to go and have to be told over and over that it was no more.
GIVE THEM HELL and keep going. If you need someone, at some point to drive you, then do that. If the tasks become too complicated, simplify it. Sending hugs from Cleveland!
Also, ask your physician about Iodine Therapy - Lugol's 5% is the one I use. They don't tell us, but most of us are becoming Iodine Deficient. I put my DH on it and within days he knew who I was again and was able to remember things more easily. He was 96.
We're eating too many chemicals and preservatives and they're hurting our brains. Try to get back to natural, real foods and see if it helps.
You might even want to try some Nutritional Shakes - my DH and dad used Ensure Plus but I'm using Premier High Protein Shakes which has 30 grams of protein per shake. I drink 2-3 a day and incorporate them into my meals. I only use the ready-to-drink as the powders contain ingredients that I have trouble with - like powdered milk and soy. I figure I'm worth it and I'm feeling better than ever and am even almost to my ideal weight now.
But don't stop your volunteering until and unless it starts to bother YOU. Only if YOU don't want to do them anymore. Don't let others tell you to stop.
Perhaps your father has a different kind of dementia (that is, other than Alzheimer's). In any case, I hope he continues to do well!
I am concerned about your driving. I live in California. My husband has Alzheimer's. He was diagnosed over 2 years ago. He is 87. If you are over 70 in California you have to take a written test every time you get your license renewed. He can't pass the written test. There are 18 questions, you can miss 3, the poor guy would miss 4. He took it over 6 times and couldn't pass it. His driving seemed to be OK. In the meantime, while driving on his 2 month temporary license, he was involved in a minor fender bender just 2 blocks from our house. There were no injuries, it was his fault. I reported it to the Doctor who advised him to stop driving.
Now for the part that concerns you. The doctor told us and it makes sense. If you are in an accident and hurt someone and they sue, they can subpoena your medical records. When they find you have been diagnosed with Alzheimer's you could and probably would lose everything. They would sue you for everything you have. There would be a very good case that you shouldn't have been driving with diminished capacity. Just driving in your county won't protect you if you hit someone, Marty was only 2 blocks from home.
With that recognition by the sounds of it you are also withdrawing from things you do that aren't run by the church and that makes me wonder if maybe you are simply accepting this without advocating for yourself more. If you have a good relationship with the pastor or an associate pastor perhaps you and you wife and or adult children if that makes sense could meet with them and plead your case. I understand the pastor isn't unfamiliar to dementia and there are other parishioners now and in the past who have suffered some form of it too but as someone pointed out each individual is and individual case and I suspect their experience, the experience they know has begun with parishioners in much advanced stages. Just sending a letter outlining exactly what you did here might help but with all the recognition and acceptance you have personally, the support you have from family and medical specialist who knows you well I doubt you are like any patient they have been exposed to and both your reasonable explanation about just how important your volunteering is to your health and how attuned you and the people around you are to changes in your condition...well I can't imagine that not putting any concerns to rest about you continuing your work or at least some work.
In fact I have a suggestion, sounds like there might be a number of parishioners in your church that could benefit from some form of purpose and interaction, maybe you could establish some program to support members suffering from dementia and maybe even for their caregivers and loved ones as well, even if it's a support group. I have always though people at various stages of this disease could be so helpful to others. Those still out and about like you could help visit and care for those housebound, maybe transport to doctors appointments or the grocery store, supervise activity clubs or worship sessions for those who can get to the church, maybe package and hand out donations to the homeless or some other service the church provides, serve at the soup kitchen and those in the early enough stages to be able to could help support those who need prompts and guidance, be paired up for these services. Someone mentioned holding babies in the hospital once or letting children learning to read read aloud to them. There are day cares that couple child and adult day care, maybe something like that at the church could be organized. Lot;s of ideas but my point is you might be the perfect person to change the policy toward people afflicted with your disease and like ones in the church and find a way to include and support them rather than kind of turn them out (sorry that sounds harsh) in their time of need.
As far as the driving, not that you asked, it sounds to me like you have a very responsible handle on it and plenty of safety nets, it sounds to me like you are simply so attuned and responsible that you got diagnosed long before most people do and I just don't see you being a danger on the road to yourself or others yet, I do see you knowing when it's time to give up the car keys well before you are a danger you have so much support so don't waste time fretting over it. Enjoy the things you can and keep up with the amazing attitude you have that's enabling you to go through this with such grace and love. What a way to go through this disease and a gift to your family.