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.
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.
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.
(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'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.
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.
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.