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