lifesaver-933560_640Rather than standing in my yard yelling this to my well-intended neighbors who say, "If there is anything I can do, call me", I decided to do a letter. I will put this in their mailbox so they have time to read it and respond if they truly mean they want to help.

I fought this. Just ask my chat buddies. Actually, I think I was feeling so overwhelmed I was not sure how to ask for help. This was seems right to me. My chat buddies, especially @Shoog, said be specific when asking for help. She has such a great support network, I thought, well why not listen to one who KNOWS??

Here is the letter in its initial draft stage. I am sure I will make revisions, but thought this might help some of you create your own and ask for help from very well intended people.

Hello Friends and Neighbors!
I am writing this to give you some information and to ask for your help. People have said to me, “Let me know if there is anything we can do,” so this letter will answer that, hopefully.
As some of you know, Rod has been diagnosed with a rare disease called bvFTD which stands for behavioral variant frontotemporal degeneration (see why they simply say bvFTD?). Rod’s mother died of the same disease, although the terms have changed over the years as hers was called Pick’s disease. It is a degeneration of the brain, specifically the fronto and temporal lobes that control social behavior, word finding and executive decisions. He has trouble showing empathy, is apathetic (thus the weedy yard), and can get frustrated easily.
This is one of the most misdiagnosed diseases. The symptoms are behavioral, so families put them off to midlife issues, stress, depression and a variety of other more well-known issues. You slowly see people pulling away from the bvFTD person as their personality changes, often in ways that are not pleasant. Rod has trouble starting things, like yard work. He sometimes loses words to describe things, he might call an apple a banana. He does not do well in crowds, they make him very anxious and frustrated.
Some things that led to me questioning what was happening to Rod was the fact that his garden has gotten smaller and smaller every year. The weeds take over and you can hardly find the vegetables he has planted. Our backyard, which was such a lovely, calm place has become over-run with weeds and vines. I can’t keep up with taking care of the house, yard, shopping and caring for my 93-year-old mom who lives with us.
When I finally started to look online for some answers to Rod’s behavior, I found that his personality changes could all be assigned to bvFTD. I immediately made an appointment with Emory Cognitive Center for evaluation. The wait was seven months. I could not wait seven months, I called and begged for a quicker appointment and they got us in on December 1, 2015.
Since then, Rod has had many tests. The wonderful doctors at Emory have come to the conclusion that Rod does, indeed, have bvFTD. An actual firm diagnosis can’t be made until autopsy, but with their experience and my observations, he has been given this diagnosis. There is no cure and no medication to stop the progress.
It is hard for me to ask for help. I am very independent, as you all know. One thing I have learned in attending support groups is that I have to get over that and understand that I can’t do this alone. This is where you come in. Please understand that if you feel you do not have time, I will understand. I will not be keeping track of who does what. I just thought putting this out there will allow you to help me in ways I need help. I know you sincerely mean it when you say, “Let me know if there is anything I can do”. So, here are some suggestions for you to fill in the “anything” part of that question. You can reach me on my cell or email me if you have questions.
1. Organize a yard work party to tame the weeds and vines in the yard. Rod can help with the manual part, but does not know how to start things so say, “Rod, here is a rake, please go rake those leaves.” If you want to see what needs to be done, call me and we can have you come over and talk about what we need.
2. We have a utility trailer we would like to sell. Let any friends you have know and then let me know if they are interested.
3. Take Rod out for coffee. He loves coffee. A trip to the Starbucks and some football talk gives me a break.
4. Making a big casserole and have leftovers? Bring it over!
5. Rod has a huge sweet tooth and I try to stay away from sweets. Bring him a few extra cupcakes from your bake sale baking.
6. Going to the store? Give me a call and ask if you can pick anything up for me.
7. Going out to lunch? I would love to join you but you have to let me pay my own way.
8. Have any books by James Patterson or David Baldacci or anyone like that? Mom likes to read, bring one over to share. You can take it back and bring it next week again, she will never know she already read it. Rod has a Kindle but she needs a book.
9. We love visitors, but call before you come. We will put the dogs away. they are not used to a lot of people coming to the door so we prefer to put them away when company comes.
10. If you visit, please know that my house is not run by Martha Stewart. You might encounter dog hair because sometimes vacuuming gets left undone but the house is mostly clean enough to be healthy!
11. If you have something you really enjoy doing, let me know because I might need that particular something done.
12. Do your kids like to play simple card games or do puzzles? Mom has a hard puzzle she is working on so come on by and help (please refer to calling to put dogs away first and hair balls)
13. Have you tried an easy crockpot recipe? Send it to me by email.
14. Know the name of a reliable, inexpensive handyman? Share his information with me.
15. Know how to fix things? Let me know, I have a few things that need fixing. Rod can help with instructions on what to do.
16. Want a new organization to donate to for that tax break? Try site. Research is critical in finding a cure. This is a devastating disease that takes the person away, slowly. This is NOT Alzheimers. Rod has a good memory.

So there it is, the first draft. I hope it helps some of you make this burden of caregiving easier by letting people help.

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Thanks everyone! I was just hoping it might help someone get over that hump of asking for help. All of you inspired me to make this move and reach out. Rod and I discussed this last night after dinner. I did not show him the letter yet, just suggested it might be a good thing. He seems to be on board. I think we have pretty much decided to stay put in our house. It is accessible, comfortable and does not involve me downsizing, packing and moving 3 people single handed. I can't imagine re-orienting Mom and Rod to a new environment, learning my way around a new town and all that goes with making new friends. Maybe when it is just me and Rod I could handle a move, but the three of us...that is way too stressful to put on my plate.


Brilliant! I wouldn't stop there. I'd send it to your local newspaper as a \"Letter to the Editor\" and see if it would \"inspire\" someone else to help another caregiver, in addition to you. Do you belong to a church that has a newsletter? Ask them to print it. Such a great piece shouldn't be wasted.

Lillie Fuller

Great Job Sharon. I really pray your friends and neighbors give you the help you need.

Anthony Zullo

Very nice letter ....I wish I could use it. My neighbors are in their 80s and 90s job ....I hope it works out well for you ....good luck


:) :) :) :) Great job, Sharon!