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CARENOTES | Past Carenotes | Let's Talk


Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 6/17/14


I am new to this. Well, actually, I have been running around to various doctors with my husband since 2009. We finally received the diagnosis in April—frontal lobe dementia. My husband is 61 and I am 57. These last few years have been a never ending episode of House. My husband used to be a lawyer with a successful practice. He was good looking, dressed well, very outgoing. I am just trying to wrap my head around this whole thing. We have a daughter who just graduated from college and a son who will be a junior in high school. This has been tragic for our whole family. I find myself crying everywhere. I am watching the man I love fade before my eyes.


Caregivers Reply

Shared by: Chris
St. Petersburg, FL

Dear Patti, I am so sorry you are going through this with your family. There is absolutely nothing good about frontal temporal dementia. My husband of 43 years passed away a month ago after an 8 year battle. The website of AFTD is the best information you will find...explore every inch of it. There may be a support group near you. My group is 1/2 hour away but worth it. Starting right this minute, make all the special memories you can and take all the pictures possible. Build your husband up for anything he can still do and try not to dwell on the negative. We did have some VERY good results with a speech therapist helping him regain cognitive skills and improvement on the Mini Mental Status. Try giving him jobs that he can do such as unloading the dishwasher, etc....Take a trip if he is able, etc...and if you are able!!! This is VERY hard for the caregiver and I got very sick after finally putting my husband in assisted living. TAKE CARE OF YOURSELF. You can't help him if you are ill! Pay close attention to new meds, as some of them do not agree with FTD patients....Namenda made my husband a monster! Wishing you many happy moments together!

Shared by: Celeste
Chicago, IL

I know Patti. I'm going through the same thing with my mom whom I care for all alone she is bedridden as well. Yesterday I cried a lot, asking God to please give me my mother back. So I as well am looking for way's to deal with this. My mom was a nurse, very active, and loved to travel with the family. So any advice anyone can give I'm open to receive it. But Patti for now... Pray, Pray, Pray!

Shared by: Carolyn
North Bethesda, MD

Hi Patti,
I am so sorry to hear of your husband's diagnosis. LBD is not an easy disease, to say the least. But you can find information about it, including the importance of building a professional care team, in the NIH booklet Lewy Body Dementia: Information for Patients, Families, and Professionals. It is available online for free. You can also order print copies. The Lewy Body Dementia Association is another great source of info.

Shared by: Dorothy

Dear Patti,
I am saddened to hear of your spouse's diagnosis. It is heartbreaking to slowly lose your life partner little by little with each passing day.
I would like to suggest that you check out the Well Spouse Association ( for support and resources. It is the only nonprofit caregiver organization exclusively for spousal caregivers. The illnesses we are dealing with may be different, but we share common issues such as how to maintain the partnership in the marriage as long as possible, how to deal with loneliness, grief, anger and resentment, and how to preserve our own quality of life.
Our mottos are "When one is sick, two need help" and "You are not alone." Support from one's peers in caregiving can help you find the strength and resilience you need for this daunting journey. Best regards.

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