I just found this site. WONDERFUL>  I am noticing that while I see Alzheimer's & Dementia... no information on FTD bettter known as Frontal Temporal Lobe Dementia, considerably less know but with similar symptoms and then add a  whole laundry list of behavioral  symptoms.. The behavioral symptoms are a hallmark for this disease.   There is very little information or support available for this disease.  While rare there are a number of people and caregivers in my area dealing with this dementia type.  Would it be possible to add an additional subheading under the health category for FTD... The challenges of caring for loved ones with this disorder are monumental.  I am sure people dealing with loved ones would add lots of information. In hopes that others would better understand it and the related behaviors associated with this specific dementia category.   Thank you for having this list.  I am really liking it. Smiles

Hi Pamtime,

Thank you so much for your suggestion!  I'm going to make sure the editors for Caring.com see it so they can consider it!

Thank you  Missy.  FTD is little understood in the medical community and it is treated different than Alzheimers.  The components we are dealing with are more behavioral, high cognitive functioning, and violence and aggression.  Many of the medications that are effective for Alzheimers are not for FTD.  Caretakers and care giving facilities are reluctant to care for FTD patients because of the violence factor.  The executive function are of the brain in most impacted.  There is a loss of social appropriateness.  The patient needs to use the restroom, so there go where they are.  Mom walks into Walmart with us and what to her was a friendly tap, punches the store clerk in the arm. The insulted store cleak informs her she is committing a felony assult. Mom pauses, looks at him, and punches him harder and calls him a baby.  She may say very rude things to people because the filters that prevent most of us from being overtly rude are gone.  We have problems with shop lifiting, obsesive compulsive bahaviors, such as watering the lawn 7 times a day. Cooking must begin at 3 dispite the fact we don't eat until 7.  She frequently threatens her care takes with pulling back her fist.  Medications help but really alot more patience and redirecting of attention and activities are important.  I would really like people to know there are other dementias out there as devastating as ALZ and caregivers out there will little support from both the medical community or the internet community.  I believe the prevalence of this dementia is more common than we would like to think and that some patients are just hallmarked wit h  "dementia not othersise specified" that fit into this FTD profile.  We need more education for the caretakers and resources in the community, and community awareness that fosters additional interest in the medical community.  Thank you for passing this on to the editors. Pam

 Pam--thanks for your input. You're exactly right that there's much more to be said on the topic. As the site grows we are indeed adding more content that addresses other dementias. Meanwhile I hope you'll continue to share your insights in our group discussions.

Hello,

I had never heard of FTD but I'm thinking  my Dad may have  had it, because he did not have the typical symptoms of regular Alz.  When he was at his worse he would punch and elbow and accuse everyone of stealing from him.  He almost had me convinced there was a "Mafia" at the Nursing Home that would put dirty things in your food if you didn't pay them money.  But the strange thing was that his intelligence and language skills seemed to become enhanced.  He would use big words and sophisticated sentences.  One day when I went to visit, he was in the room across the hall from his room.  So when I ask him what he was doing over there, he said, 'I'm over here studying the rate of inflation!"  My dear Father passed away 5 years ago from lung cancer after spending a year and a half in the NH restrained to a wheelchair and then restrained to the bed.  It was the most terrible thing to see, but our family knew it was the only way to protect him and the people around him.  The staff was so good to him, he really didn't seem to notice most of the time that he was restrained.  We visited almost everyday too so I know that helped.  Just wanted to share that with you all.  Thanks for the site.  Hugs and Prayers to all caregivers.  I am still caring for my 83 year old mother who has lived with my husband and me for over 2 years now.

Joyella, you are earning your crown in heaven.  Caring for mom has been the most rewarding and most painful experience of my life.  I recently had to make the decision to place her in a memory care unit.  Because of lack of support from my brother and the inability to get joint approval on paying for respite or day treatment the caregiver gave out.  While the  most painful of decisions I have had to make it will be one of the best in the long run.  I cannot care for her if I cannot care for me. My heath was taking a major hit and more than one doc told me if I did not pass the gauntlet I would probably be in the ground before her.

I never expected the sibling to be the most miserable aspect of her care but they were and continue to be. It is amazing what control and money can do to people. Sadly when it is all said and done there will be neither. A mother that loved all her children dearly will watch her little family die on the vine....I have decided when it is all said and done that I will not continue a relationship with my sibs.  Sadly the family that was so important to me has become my worst nightmare. They squabble and divide mom's assets before her death, the make false allegations to the point that I had to call in protective services and make a report and get them involved. The sibs alledgeg I was abusing mom via neglect, misusing finances, etc,,, mean, mallicious, and false.... so I brought in the state services. If there was any basis tp what they are saying then I needed to make the report to either confirm or deny the allegations and ensure my mom's safety at all times.

In desperation I finally had her admitted to the hospital until she could be placed. The Lord works in mysterious way.  A bad UTI provided the hospital with the ability to hospitalize her.  The sibs got even worse...  I placed mom and they continue. The state investigator has told me what I need to do... emergency guardianship.... more of her funds spent.  She is angry because she does not understand why she was served and what did I do...  my heart is torn.  I was raised to turn the other cheek .  I continue to struggle with the cheek, I want to grab a club and knock some sense into these nuts.  The only person who pays is mom...can't they see what they are doing.

When it is all said and done I can lay my head on the pillow and know I did my best. I can clear my name of allegations that are based in lies and malicious intent. But it will not replace the family I will lose.

Keep up the good work with Mom. Continue to see out information on FTD as it my provide you with more understanding of your fathers disease.  Caregiving is rewarding and a lot of hard work, but the little windows of time filled with cherished one of a kind moments, make it all worth while.

One of my most precious moments with mom was a hostil moment.  She was being a total pill one day and I was at a frazzel. I grouched at her " Why are you doing this to me, mom?"  She quickly turned and rapid fired , "because you will love me anyway!"  I love her honesty, she was right. I will always love her anyway!.

Take care and God Bless.,

Pam V

Gosh, Pam, I'm so sorry for all the problems with your family you've had.  They say the ones you love always hurt you the most.  I agree that money and control does some terrible things.  I think it played a big factor in my brother taking his own life.  He was helping me care for Mom and we were trying to let her stay in her own home.  She was getting less mobile and her mind was starting to get confused too, so I suggested to him that I take her to live with me.  He was not well and his wife had a great paying job, so it only made sense for her  to move in with me.  Well, he would not agree with me and I suspect it was because Mom has a good retirement income and a nice nest egg in the bank.  I know that his wife is high strung and a very selfish person so I suspect that she encouraged him to not talk to mom about moving in with me.  I didn't push it and I continued to pay all the bills, clean the house etc until my husband retired and wanted to move 3 hours away.  He had always been so gracious about staying home alone while I went to appts etc with dad and mom and took care of them.  He was sick himself, he'd had a heart attack open heart surgery and was suffering from depression so I agreed to move.  I went to Mom's house every week for a year and stayed the week-end to do the chores.  Then because of my own health, I started going only every other week-end.  I still did the house work took her to the dr. paid the bills, but my brother had to take over some things like over seeing repairs and picking up her refills. I told him if it ever got to be too much for him to let me know and I would take Mom home with me for however long he needed but he never complained to me at all.  Then one evening Mom's neighbor called and said I needed to come home that my brother's wife had just called Mom and told her that my brother had just killed himself!  I cannot help but believe that if Mom had not had any money or much income that they would have let her come live with me and my brother would still be alive today. 

Now after 2 years, her health is so bad I don't know how much longer I can keep her out of the NH and like your situation, the money will be gone and no one will benefit from it but the NH.  If we could just all sit down and plan things together it would be so much better.  Gotta go,

Hugs and Prayers, Hang in there and love your mom anyway,  We have to don't we?

Talk with you later.  I need this so bad!  Please write and talk about anything you want.  I am so glad to find someone who has the same feelings sometimes as I do.  Joy

Joy,

Big hugs or as my mom and I call them "the big mama hug" to you. This was developed shortly after my mom lost her mother. She replaced her every Sunday call to her mother to call me instead. One particular day she was especially down and told me she would give anything for another hug from her mother. I was 600 miles away but offered her a "big mama hug" over the phone.  We laughed and cried together and a special bond was born between us that day.  We still ask each other for Mama Hugs. In moms descent into dementia she still smiles and gives her Mama Hugs.

Joy, remember also that there are many reasons for suicide. You mom may have played a small part in the added stress in your brothers life but with this added 2 years you may want to look at the other factors in his life.  You and I both know there are precious moment s in caregiving. We also know that in many cases our male siblings do not gravitate to the "caregiver" role as easily as many females.  I am not trying to stereotype. We are conditioned almost  from birth to be caregivers and males are conditioned to be breadwinners.

It is amazing what finances and control issues will do to a family. It is apparent that mom was the glue in our family and typical of a lot of famillies, we had our share of dysfunction. At the urging of APS , adult protective services, I hired an attorney and filed for Guardianship. The brother we lived with came up to my state and kept telling mom he was taking her home. She could not and would not settle in. Kept taking her clothes out of the drawer telling me she was going home. She was able to tell the court investigator that she wanted me to be her guardian.  I go to court tomorrow. All three brother have contested. 

During the investigation the brothers 3, alledged neglect and abuse. Funny, only after I leave the house and move back to my home state.  I have a few questions for them. Why is it OK now to alledge abuse and neglect and financial mismanagement. It was good care when it was in the brothers home. Brother #2 states to me < wow, I couldnt do this>, How often do you visit your mother, what medications does she take, what are her medical problems, when you last  visited mom did you spend time alone with her in a care taker capacity.  Have you ever helped with her daily activities, ie. toothbrushing, combing hair, styling hair, changing depends, cleaning her up after a BM explosion, taken her shopping, let her help you with a project.  In 17 months not one bedsore. It is amazing that siblings can sit back and make allegations without consequences.  It seems to be all about the money.  Well, the lawyers are getting it now. IT just means that she will outlive her funds and we will have to go to state aide.  They should be proud of themselves.

The bottom line, Joy, is this: you do the best job you can do with the tools you have to do it with. We are going to get through this as many before us and many after us will do as well. When it is all said and done we will have pockets of memories that are only shared with fellow caregivers. Precious one of a kind moments that were born out of the closeness only caregiving affords.  Mom had a particulary bad bowel incontinence day and had attempted to clean herself up. The results was disasterous. Fecal material everywhere.  When I went to check on her and saw the mess, I just started to help her. She paused and the look of concern was off her face. She smiles her twinkle smile and told me , : I am so glad you are here for me, I knew I could count on you"  Hey it don't get any better than that.

The holidays are upon us and emotions run high. My saddest realization was I won't be getting mom's care package this year. The persimmon nut cookies, the coconut diamonds, the haystacks, her awesome fudge, and her beloved fruit cake. OMG what a fruit cake.  Sure I can bake the stuff but the ingredients won't be the same. It will be missing the Big Mama Hug she placed in every bite.  I will continue her tradition and make for my kids the "care package" but the brothers are on their own.

God Bless and Keep you and Your safe and cherish the moments. Celebrate life and love.  Remember we are all in a very special family. A wholesome family of caregivers will be my family. When this is all said and done, I will probably be without a family relationship with my brothers. While they have the right to act out in grief, greed, or what ever montivates them the consequences will be dire for me.  I do not feel I can continue a relationship with them under these circumstances. When the "glue " of the family is gone "mom" there will not be a family left. This is so sad because this was the most important thing to mom.  Up til now, for me too.  In some ways I feel like a man without a country.... except I have no family....

Would I change a thing about taking care of mom? Yes, I would have moved her up here instead. Other than that, not a single thing.... She was my reason and continues to be....

Enjoy the holidays, celebrate a New Year, Celebrate that mom is still here and New Memories are yet to be born. Celebrate Life.....

Nice to chat with you,

Yours, Pam

Do you have a blogspot for ONLY CHILDREN  trying to care for infirm parents or parents with Dementia or other health concerns?

The pressures are significantly different; no siblings to argue with, but none to share with either; and if you are geographically distant, we need help figuring out when it's time to intervene. 

Also, there's the dynamic of 'being outnumbered' by the parents that don't want change vs. being mentally intact, and thinking that something's gotta change....

Please help.

89 yr.old mother has middle stage AD, lives in a retirement home with activities 24/7 and free daily transportation to grocery store and shopping mall has recently demanded two checks for her purse made out to her for $250.00 each. As her son and handling all of her financial and health matters, per her request, I tell her she has a credit card and all the cash she needs in $100.00 check increments. She then proceeds to have a temper tantrum like a 4 yr. old and says it is her money and she shouldn't have to beg for it. She also says the $250.00 checks in her purse will make her feel more secure.Then we reminder her that she has not asked for anything that she hasn't received, she starts crying. We know she spends all of her monthly income on things she doesn't need. She doesn't do anything but spend money for ammusment.She has no other interests in spite of everything we have suggested. How and what do I tell her specifically about her demand?

Hi SRC,

I highly encourage you to copy and paste your post into a new thread in our Alzheimer's support forum. There you can connect with others caring for loved ones with Alzheimer's and they may have some suggestions for you.

Thanks!

Missy

SRC, remember that your mom has lost total control of her life and this is the one area she is trying to regain some. She is correct that it is her money and her dignity. Many facilities have a cash account for its residents. You may suggest to your mom that using the cash account will ensure readily available funds for shopping while keeping the secure from other residents that are ill and could come into her room and borrow her funds. This phase passes all to soom and you will miss it. My mom focused on the loss of control of her funds to the end. Yes, she bought some frivilous things but they gave her a sense of control, personal dignity, and brought a smile to her face. Her prize purchase was a little bunny that sang and danced to the big bopper of Easter song. I still play it occasionally, it reminds me of the twinkle and grin in her blue eyes. While you are trying to conserve her funds to make them last, remember too, that this woman scrapd and saved to enjoy those funds at some point in her life. Better she spend it on herself. Just my honest opinion. It all boils down to individual decisions. Towards the last mom loved her toysand new clothes tho she had plenty of both. She also loved to go out to lunch. Sometimes redirecting the focus to something else, such as well we will need to order checks from the bank may also appease her demand for checks to carry in her purse. Best of luck with this issue. Pam