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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.

Jfbctc, it appears that you are going to have to be creative in what you are willing to do. I am sorry that you are running into brick walls with your attempts at volunteering.

Can I recommend that you really look at what you would find rewarding and start checking into what you can do to be a blessing in that area.

Perhaps reading to children at a library, walking dogs, cuddling cats, cleaning parks, teaching adults to read, visiting senior centers for games or fellowship, reading at the VA hospital, friendly visits with seniors, vets or the disabled.

There are loads of things that need loving caring people to make their cogs turn. God will place you right where you are supposed to be.
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Reply to Isthisrealyreal
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jfbctc: Thank you and good luck. I've been working here for going on 6 years now.
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Reply to Llamalover47
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Jfbctc, did you look at volunteer opportunities locally or only on the main website?

Alz.org's website says, I quote (well, cut-and-paste) :-

*******************************
Find volunteer opportunities through your local Alzheimer's Association and make a difference for those impacted by Alzheimer's and other dementias in your community. 

Contact your local Alzheimer's Association today to see where your skills and talents are needed. Some of the many areas we need volunteer power include:
Public education and awareness programs
Special events, such as Walk to End Alzheimer's® and galas or other fundraisers
Office help
Speaking engagements: Share your story living with Alzheimer's or caring for a loved one with the disease
Helpline support calls
Advocacy

********************************


So if it was your local association that told you they didn't have any use for you except in a test tube... Tell them to read their own website.
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Reply to Countrymouse
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jfbctc May 21, 2019
Hi Country Mouse,
I go to a local ALZ Caregivers Group that is unusual in that they allow patients to go to the meetings, because there are not enough patients that will go for a patients meeting. It was the local Caregivers Group that said Thank you and dropped the subject. They didn't come out and say no verbally. They just ignored my request to join in. I have did a lot of public speaking in my professional life, and in voluteer positions. I explained that was told thank you, and on the couple of occasions that I brought it up since, again I was told thank you. I may have ALZ, but I know when I'm being ignored. Afterall, I have 5 sisters and 4 brothers, and I learned all about being ignored. Honest answer.
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Is there another church you could go to? I can't believe they won't let you be an usher. What could you possible screw up doing that job? I think these people are just not educated about this condition. I'm sorry they are treating you this way. Based on your writing, you are still very capable. I've seen college educated 20 somethings who can't write as well as you. Please try to find other volunteer work. I'm thinking the Alzheimer's association would be glad to have you.
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Reply to Toadhall
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jfbctc May 20, 2019
Hi ToadHall,
Thank you for your encouraging words. Unfortunately due to the size of our church and the number of people attending Mass each week, Ushers actually have a lot of responsibility. Security has come to be of utmost importance when you have over 1200 people in the church, we must keep an eye out for people and items left sitting in unusual places which could both be hazardous. I don't want to site other areas of concern, but it just isn't passing the baskets for collection and leading people to Communion anymore. I accept the Pastor's point of view and I knew this was an inevitable action. He has a big job to keep an eye on. My maternal uncle was also a Priest and Pastor, and I know more than the average bunny about the responsibility they carry on their shoulders 24/7. The Church is not a democracy, nor should it be.
Yes, I also attempted to volunteer for the ALZ Assoc. and was told thank you, and no we don't have any way of using you because you are not eligible for any studies. No role for anyone that is simply a patient. Oh well.
I start each day saying, the sky is blue, the sun is bright and we woke up breathing. If it's cloudy, the sky is blue somewhere above those clouds, etc.
I am a happy guy, with a DW and wonderful kids
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jfbctc;

...continuation from the run-on queen!

As for what to do going forward - I wouldn't resign from the service club you belong to. Sit down with the people who run it and have a discussion with them. Although you might have to forego some duties, you can probably continue with others until it becomes apparent to you and/or them that you can no longer perform these duties.

STAYING physically, mentally and socially active is a way to prolong the inevitable decline (applies even to those who DON'T have dementia!!!) Physical activity is important. Having MD, perhaps you have to curtail some physical activity, but keep doing whatever you can, both physically and mentally!!!

Take up new hobbies or volunteer activities now so if/when you can no longer participate in those activities that you currently do/love, you'll have something to keep you active. There have been many good suggestions for how to use your volunteer services elsewhere. Many needed, not enough to go around! Most would be more than pleased to have you!

Reading and socializing are important. I saw your post about reading and that's a good sign! Even if you don't remember all that you read, keep reading! I have been re-reading novels I read long ago, and though I do remember the overview of most, there are a few that I do NOT remember reading at all!

USE whatever you have before you lose it! My mom used to harp at my dad to not sit so much - use it or lose it. He chose to sit and became unable to get around. Now I remind her of that because she sits too much. She does recall telling him that, but still sits. :-(

So, in the words of Quintus Horatius Flaccus (65 BC – 8 BC), more widely known as Horace:

Dum loquimur, fugerit invida
Aetas: carpe diem, quam minimum credula postero

which translates as:

While we're talking, envious time is fleeing: pluck the day, put no trust in the future!
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Reply to disgustedtoo
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jfbctc;
"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."

Understand that we're ALL terminally ill, in some sense - we just don't know for what or when.  In your case, it's eventual, but not tomorrow! It's sad to see it develop it at a fairly young age, but please make the most of it while you still can! Even with Alz or any dementia, it takes it's own course. There is no timeline. As someone posted, if you've met one person with dementia, you've met one person. So don't look at it as a death sentence now - look at the positive side! You have time and you CAN make good use of that time!

I'm not sure why ANYONE would tell you you're no longer mentally competent. Maybe the SS office did this because IF you are declared disabled, you collect FULL SS benefits (same as if you continued to work to your full retirement age) AND 2 years after you get Medicare (without waiting until you reach 65.) Also, SS information would fall under HIPPA, so no one else needs to know unless you choose to tell them. I already knew mom started dementia and had it confirmed later by a nurse from the aide service we were going to use to keep her at her home (she negated that by refusing to let them in after a few months!) DESPITE this, we went to the Elder Care Atty to update everything that needed to be done (new will/trust, etc. fortunately all medical and financial POAs were in place. DO consider having all this done now.) HE talked with her alone and determined that she was competent enough to make decisions, despite dementia. Even after we decided to move her later (she lived alone), she was competent enough in most respects. Short term memory was fading, but still, she "manages." She is now into year 3 at the MC facility and STILL mostly self caring (age 95.) More recent memory is lost, but I would not consider her done by any means! Over time the capability to make good decisions will become more difficult for you, but I don't see that as an issue for you at this time!

It's good that you are keeping up with everything and including the family. Good that your children are on board as well. It's great that one went with you and to learn what to expect. Even after several years, I'm still learning.

It's sad that your pastor won't let you participate in some way. Obviously volunteering to drive anyone who needs help might be off the table, but seriously, acting as an usher or some other benign volunteer activity? Unless you started seating people in inappropriate place or started causing problems during the service, why not allow you some measure of dignity? Despite his "experience" with dementia, he clearly doesn't get that many people can function relatively normally for years, especially when it involves long term memories, and you said you've been doing this for 27 years!

Driving - most people haven't brought this up with ANY doctor before it becomes necessary because in general most people are Dxed after-the-fact. Our mother stopped driving at night due to unrelated vision issues, but over time her "circle" of travel became smaller. Bringing up loss of driving, her response was to say "I don't go far." Doesn't matter. The signs were there with the back of the driver's side mirror gone (and no clue that it was gone), white stripes on both sides of the car from the garage door trim, and the "flat" tire that was actually a tire split from hub to ground, rim damaged and the wheel well trim pulled half off and bent. Good lord, what did she hit??? The thought of her driving this 8 cylinder behemoth (Grand Marquis) and endangering her or someone else was too much given the combination of vision and hearing loss and dementia! She was angry for a while when we took the keys/car away.
To Be Continued,,,
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Reply to disgustedtoo
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I am so sorry to hear about your diagnosis. I can only imagine how difficult this must all be for you. I can understand your being concerned about not being able to do volunteer work. I wish I could understand why someone would feel you could no longer participate in an activity that could help you mentally as well as keep you busy in something spiritual. But no matter their reasons there is still things you can do for yourself to help you stay mentally active and grow in your spirituality. There is a wonderful free website, jw.org, that has a free online Bible study program. It is designed to help people of all religions get bible based answers to life's biggest questions. It isn't volunteer work but it was a life saver for me and for my mother in her battle with Alzheimer's. It could help you spiritually and also help you know how to deal with others as you face your own trials. As you grow in Bible knowledge you can share what you learn with others and actually create you own volunteer work. You can get free bibles there and many amazing videos and movies as well.

Keep.visiting this wonderful webpage as too. All of the people here are so amazing and you will get so many suggestions and ideas. I hope this is helpful for you. My thoughts and prayers are with you.
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Reply to neveralone
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https://www.utas.edu.au/wicking/understanding-dementia

I learnt about the Dementia Friendly Communities in the UK & was really inspired.

https://www.alz.co.uk/dementia-friendly-communities/england

I hope these are of interest.. Whatever else are your interests - keep them up, just modify if you need. All the bestl.
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Reply to Beatty
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Firstly, another one here shocked at your Pastor wanting you to stop volunteering. He may have had family members with dementia. But there are many types of dementia & every person is different.

Secondly, you can explain yourself very well. You said it was a very big church congregation? There must be many other people diagnosed themselves or caring for a loved one with dementia. Maybe your local Alz organisation could help set up a new support group at your church for this? You would be an amazing resource for them.

Thirdly, I completed an online course (completely free) called Understanding Dementia (by University of Tasmania, Australia). I will attempt to add a link separately.
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Reply to Beatty
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I am concened why you didn't start on the Alzheimer's med at start of diagnosis. I am also concerned why you're still driving. A family member has this horrid disease so I know how it progresses.
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Reply to Llamalover47
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jfbctc May 3, 2019
Hi Llamalover47,
Perhaps somewhere along the line, I may have written something incorrectly. I began taking Donepezil the day I rcvd my diagnosis from my Neuro Dr. that was 34mos ago. I was put on Namenda 9 days ago. I have been an avid reader since the fifth grade. I'll be 60 in two months. I noticed how much the Donepezil was doing for me when I began to once again read 10-20 pages of a book and enjoyed it. Going forward from the time I was diagnosed, I am back to 60-70 pages a day. Do I remember much of what i read, no, but I do enjoy it in that moment.
I have read many of your posts and I want to thank you for sharing your comments on this forum. I first started seeing my Neuro Dr 14 yrs ago. I first began seeing her for help diagnosing neuropathy, and a form of Muscular Dystrophy. I have complete confidence in her.
We know each other well enough that we never hesitate to have frank discussions. I have followed her through affiliations beginning when she was a fellow at a very large metropolitan University Hospital and on to two local hospitals that have been gobbled up by other hospitals. She is the right doctor, n the right spot as far as I'm concerned. My best to you and keep on posting. You definitely make a great contribution to our Aging Care Forum.
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From what I understand, someone at the church told you to stop being a volunteer. Let me say I'm sorry that someone in your church family did this when their duty to all people is to lift them up. I'm sure if you think back, this very person has done other similar things to others in the past. There's always a couple of rotten eggs in any group. Rise above him/her. If it happened to be the pastor, shame on him/her, but try to over look the ignorance.

If there are certain details that require accuracy in your volunteer position (keeping records, treasurer duties, etc), then look around to see how you could fit into another position. Clearly, you want to do a good job and church activities are built upon those who volunteer time. Ushering is not an accuracy or technical job, so there should be no reason at all not to continue in that capacity.

If this situation has changed your perspective of the church, as a whole, find a new church family. Meet with the pastor and explain your medical problems and your desire to volunteer/remain productive. I bet there is another church who would welcome you with open arms.

As far as driving, have you ever forgotten where you were going or confused on how to get there/get back home. If the answer is yes, perhaps it is best to hang up the keys. You do not want to be suffering a period of confusion AND end up in a situation where you could be harmed or taken advantage of. If you do not have one, get a medical alert button and start wearing it now (to create the habit) before you really need one. Walmart sells a really good one called 5star that also has gps in case someone is looking for you. You do not have to be within a certain distance from a base unit (at your house) for it to work. And they answer the button very, very fast if you need help.

If you are still confident in driving without location confusion, continue your daily outings. My grandmother told me she got somewhere and couldn't remember how to get home and she pulled out in front of a big truck because she didn't gauge the speed of the truck - those two things convinced her it was time to stop. Her decision. Had her dementia been more advanced, one of us would have probably disassembled something on the car so it wouldn't work. Your family probably will, too, in the event you do not recognize a problem on your own.

Check out a nearby nursing home to volunteer. Often they need help to have a game time or other patient activities. Ask the activities director if there is something you might be able to help with.

Don't give up! Do not cut yourself out of doing the things that are normal, daily, activities. If you are not finding open arms in your own church maybe it's not really where you belong. And if you leave, be sure to have a sit down with the pastor to let him know how deeply someone's inappropriate actions and words hurt you. Perhaps the church needs to review how they treat parishioners. Go forth and continue to do good!! Jewels in your crown!
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Reply to my2cents
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First, the well written letter that you have written above, would suggest you are not very far along with the disease, and would make some of us wonder how you even came to be tested at this early stage. And second I can't help but wonder how or why your illness was mentioned to or came to the attention of the various places you mention. Third, most of us have spouses or loved ones that continued to volunteer in some capacity until their disease was quite obvious to everyone. We are all quite disturbed by this and wonder why you have been treated in this way.
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Reply to Johnny13
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I like so many here was shocked and a little confused about your original post and then as I read the thread incensed by the thought that a church and or Pastor would do this. To me the fact that your congregation is so large should make it easier to keep you or anyone with differing abilities involved and find ways to take advantage someone with your experience and ability offers but I can't go so far as to say move on to another church, you are obviously a well established parishioner there and the community is part of your life, part of what keeps things familiar and safe even as your disease progresses.

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.
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Reply to Lymie61
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Dear jfbctc
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.
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Reply to MaryKathleen
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Yes, you will. Instead of pulling out of everything - start trying to find diets to help your body and your brain to fight the Alzheimer's. Early-onset Dementia is not the end of the world. My father was diagnosed with Early-Onset at 80 and it never progressed from that point. He started eating healthier and it made a huge difference.

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.
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Reply to RayLinStephens
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jacobsonbob May 2, 2019
I just wanted to mention that "early onset" refers to the age at which Alzheimer's appears, and NOT how far advanced the disease had progressed. Diagnosis at age 80 would not be considered "early onset"--it's just that your father's condition has stayed in the early stages. John, the original poster, is only 59 which IS considered early onset.

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!
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So your pastor has experience with HIS family members, doesn't mean he knows it all, and his judgment call on you or potentially any other church member is clearly not objective.  And determinations for competence may be legal as well as medical, and a proclamation by a Social Security office leaves me to wonder about  the accuracy beyond anything other than a social security disability issue.  Don't throw in the towel yet and give up based on these couple individuals.  It's possible you may stay in this more functional stage for a long time to come, particularly if you continue with your daily routine and activities which are probably, in my biased and non-scientific opinion probably more beneficial than the pills!
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Reply to gdaughter
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I'm confused...who told you to stop?  What an ignorant thing to say/do.  If it was your neurologist I would be tempted to consider finding another.  There appears to be no justification for that at this time, unless driving is a concern, which it doesn't seem to be at this moment.  If those in charge where you volunteer asked you to step down, shame on them for not accepting the reality and creating some variation of your assignment that would accommodate your changing needs, if any.  Let me share a couple personal episodes sort of related:
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!
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Reply to gdaughter
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Dear jfbctc,
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.💕
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Reply to Kathie333
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I hope you mean it's your neurologist who is trying to clip your wings, because if not, I have to say, I'm stunned that your CHURCH would be so dismissive and callous instead of using your plentiful gifts as a volunteer in other ways. This is borderline discrimination. If they don't want your help, find a church that actually ascribes to the teachings of Christ!

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.
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Reply to IsntEasy
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My additional suggestions are as follows:
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.
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Reply to Judysai422
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Unless you are doing something that if it was done wrong could harm someone [like a surgeon] then why stop volunteering now - possibly make sure that you are never alone [more for your sake] but these long done duties are almost second nature to you now

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]
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Reply to moecam
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Church are a dime a dozen. Go elsewhere if they cause you problems.
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Reply to cetude
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You write very well. Are you sure you have early onset Alzheimer's? Doctors have no physical tests, that is, not like tissue samples or blood work, other than behavior; psychiatric meds can mimic those behavioral symptoms.

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.
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Reply to cetude
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Therefore let us not pass judgment on one another any longer, but rather decide never to put a stumbling block or hindrance in the way of a brother. Romans 14:13

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
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gdaughter May 2, 2019
EXACTLY!!!
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My first reaction is what a cold action by a place that’s supposed to be a safe haven, a church, just wow. And though you may have lost a lot you certainly haven’t lost being useful and being insightful and caring. I’d be amazed if there isn’t a place that would value your contributions. We all have areas where we mess up and areas where we excel, and while you can think and write as well as you do, you’re certainly capable of service. I’m sorry you were treated poorly by those who failed to learn compassion
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I applaud your insightful comments, determined spirit, and willingness to do what you feel is right for your situation.

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!
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Reply to TinkerToo
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My heart hurts for you.
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.
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While yes, it's discrimination, there's not much that can be done about it because churches are claim exemption due to separation between church and state. You can attempt to go through the church itself, though. You can write to the higherups in your area, whatever your denomination is. Unfortunately, they might retaliate, and if this happens there's not much you can do to stop it.
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Zdarov May 2, 2019
The OP seems okay with the church’s decision.
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jfbctc....Oh my gosh! first you are amazing.
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.
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gdaughter May 2, 2019
Oh YES!  Hugging dogs, hugging babies...I've often wondered about my mom hugging/holding babies, but doubted the local hospital would be open to that...but what a great idea for a program...if someone from say the Alzheimer's Assn would volunteer to oversee the volunteer baby huggers...wouldn't that be great!?
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You must have friends at the church and other organization where you have volunteered for so many years. You may want to ask one of them to "pair" up with you or be by your side as you volunteer just in case you get into any difficulty. A church should be the last place to ask you to desist volunteering although they do have to protect themselves against the chance of someone getting hurt. See if you can work out a buddy system.
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