My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

**UPDATE (April 7, 2011)

My name is Kathy Ritchie and my mom is demented. She was diagnosed with frontotemporal dementia in 2010. She has lost so many memories, words and all of her freedom. Still she’s a happy, loving human being…………. who doesn’t even know my name.

While I’m lucky to have friends and a therapist who listen to me from time to time—fast forward and I’m in a different place where I don’t alway feel like talking about it, so I don’t tend to rant, rave, cry, babble, and just talk as much these days—I know that other people are not like me and everyone is facing a different reality………………Knowing this both pushed me to create this space and continue writing about my own experiences with my mom. My hope is that this blog will  help others going through this wretched ordeal. I don’t want to exploit my own situation, but in telling my story honestly, I suppose in some ways I am. I hope you will forgive me. But if this blog helps one person get a grip on what is a complicated and emotionally and financially draining mess with no happy ending in sight, then I am happy I did so.

I also wanted to create a space where judgment has no place. Not surprising (or maybe so), it’s amazing how many people step back when your loved one becomes so grotesquely ill; it’s also amazing how many people will judge you, even scorn you for doing only what you can do. Good thing this blog isn’t for outsiders.

As young adult caregivers in our 20’s and 30’s, navigating the demands and challenges of our own lives—personally and professionally—with that of our parent’s disease is hard. At times, finding the middle ground feels practically impossible. I made one of the most difficult choices of my life in 2009 when I left New York City to be with my mom. I had not job and not a lot of money. But life has a way of working out. At least for me it did. And here I am……………………………

Remember, there is no right or wrong answer when it comes to dementia, frontotemporal dementia, vascular dementia, lewy body dementia or AD. All you can do is your best with the tools you have. I hope this yet another weapon in your arsenal against the ravages of this disease

Kat

THE ORIGINAL “ABOUT PAGE” COPY

My name is Kathy Ritchie and my mom is demented. She was diagnosed with multi-infarct dementia and Alzheimer’s disease in 2006. Despite losing memories, words, and her freedom, she is a happy, loving human being—who also has a much more impressive social calendar than I do! Yet, when I tell people that my mom has dementia, their initial reaction is one of shock followed by, “But she’s so young!” Actually, she’s not. She’s 71. I’m 31.

While I’ve been lucky to have friends, a support group, and a therapist who listen to me rant, rave, cry, babble, and just talk, not everyone has the same resources that I have or they simply may not want to talk about it. Knowing this pushed me to create a space where I could hopefully help others going through this wretched ordeal. I don’t want to exploit my own situation, but in telling my story honestly, I suppose in some ways I am. I hope you will forgive me. But if this blog helps one person get a grip on what is a complicated and emotionally and financially draining mess with no happy ending in sight, then I am happy I did so.

I also wanted to create a space where judgment has no place. Frankly, telling someone you don’t like your own mother because she’s sick or you can’t connect emotionally to her because she’s no longer the same person or you’re frustrated that your life has to change as a result of the disease sounds extraordinarily harsh and selfish to most outsiders. Good thing this blog isn’t for outsiders.

As young adult caregivers in our 20’s and 30’s, navigating the demands and challenges of our own lives—personally and professionally—with that of our parent’s disease is hard. At times, finding the middle ground feels practically impossible. I have taken many steps back in my career and personal life to spend more time with my mom who lives in Phoenix. I live in New York City.

Balance is just not in my vocabulary.

Remember, there is no right or wrong answer when it comes to dementia or AD. All you can do is your best with the tools you have. I hope this yet another weapon in your arsenal against the trauma of dementia and AD.

Kat


**Disclaimer:

I am not a medical/dementia-care expert; I am not an authority on dementia (Alzheimer’s, frontotemporal, vascular, etc) beyond my own experiences; I am not a lawyer; I am not a financial advisor. My objective is to share my story, my experiences and if they help you on your journey, then that is a good thing.

68 thoughts on “About Me

  1. Holly says:

    Hi Kathy,
    I came across your blog and just wanted to say keep up the good work. My Dad was diagnosed with Lewy Body Dementia when I was 29. Things were getting difficult for Mom to handle so I made the decision to pack up life in Sydney, Australia and move “home” to help care for Dad. Like you, I am a ‘young adult’ and I started a blog for many of the same reasons. (http://lewybodydementia.wordpress.com)

    Anyway, thanks for a great blog. If you don’t mind, I’d like to add it to my blog roll.

  2. Kathy Ritchie says:

    Thank you Holly! Always appreciate the support and yes, add away!

  3. Paul says:

    Kathy,

    You are a brave, honest and powerful woman I feel honored to call a friend. The strength and honesty you display here is an inspiration to me.

    Fight the good fight and know you can count on me for any support you need.

  4. Hi, Thank you for taking the time to read the blog. I hope you find some useful info…………. very sorry you’re about to embark on this journey. i have no bits of wisdom to give you except do what you can and dont give up your life……. it may sound selfish but you’ll lose yourself to the disease if you sacrifice yourself completely. remember, you may stumble and fall along the way, but we all do and you get back up. some days will be good; others not so much. just make sure you give yourself some time. thank you and best of luck.

  5. Corina says:

    Thank you

  6. Megan says:

    Kathy,

    Finding your blog has been such a blessing for me. Like you, I moved home in 2008 when it became clear that my own demented mom was getting bad, and have been by her side ever since. I’m 22 now and she is 63. This experience has been so incredibly trying, and I am often completely overwhelmed with such strong emotion that I don’t know how to handle it. Knowing that there are other people like me out there, who really do understand how this feels, is a huge comfort.. and I can’t thank you enough.

    Megan

  7. I am so incredibly thankful to you Kat for creating this site. My mom was just dx w progressive aphasia and frontotemporal dementia @ the age of 62. I lay awake now @ night wondering what to do and looking for support. Thank you!

  8. i’m so sorry about your mom. i hope the blog helps you … with resources and support. this disease, simply put, sucks. good luck and thank you for reading the blog. it means the world to me!

  9. Kathy,

    What a wealth of resources. I just moved home three months ago to assist my dad to take care of my mom. She was diagnosed with FTD – Primary Progressive Aphasia when I was 22…Although we were noticing symptoms since I was 18. It has been a rough journey. I am glad to see you are writing candidly about this. I just started my own blog too if you’d like to check it out! (only two posts in…!) http://discordantcare.wordpress.com

  10. Emily says:

    Glad to have found your blog. My mom was diagnosed with Alzh. in 2006 at age 54. My Dad is her primary caregiver, but I’m age 30 and the oldest of their five kids, and we all feel the impact. Glad to know another resource.

  11. I’m so sorry to hear about your story. Hope the blog helps some. It’s not an easy road. Stay strong and good luck with everything… kat

  12. Howard Glick says:

    Hi Kat,

    I’m sorry to hear about your mom and your difficulties. I wish that you were back in NYC so maybe I could meet you and help.

    I found your blog by tracing you from my blog. My name is Howard Glick and I have FTD for close to 8 years now. Be well and stay strong.
    Howard

    email – howardjglick@gmail.com

    FTD/Dementia Support Blog Link

    http://earlydementiasupport.blogspot.com/

  13. Jimi says:

    My mum talks to mirrors. All her old friends exist there. I used to to be be so close to me Mum. Now she does’t know my name. My name is Jim but now she calls me Paddy (Paddy was the first of her brothers to die). When I listen to her conversations with the mirror all she seems to talk about is death. I wish my Mum could just die. I’m so tired of looking after her. Yet I dread the day I have to look into that hole in the ground. Mind you, I’ve had my share of death; First my brother died in a motorcycle accident (when I was 13)….That fucking killed me off. My brother had to break it too me. I got up and cried into my Ricecrispies..I don’t think I’ve ever been the same since…Funerals are sorrowful rituals….horrible stupid box burning or the ground…at least I can read Seamus Heany

  14. Hi! Nice to meet you…. I enjoy your blog and I’m happy to see that you’re writing is bringing some much needed attention to the disease. I saw your blog on that facebook site. i think its great that you’re sharing your story…. your point of view is so unique. keep writing. keep sharing. keep educating. tx! kat

  15. I am so sorry for your loss…. and i am sorry to hear about your mum’s decline. this disease is wretched and i wish i could say something that would be comforting…. we just had to place my mum in a home. its sad. a weird place… its as though she’s died, but she’s here. i have no words most days. stay strong Jim.

  16. Hi Kathy,

    Your blog is amazing, Im studying at University (in England, by the way) at the moment and working on a presentation about Dementia for my class, and I have found your blog really really helpful! To read about families point of views, opinions and feelings. I wish you all the best

  17. Thanks so much. I appreciate you taking the time to check it out… its certainly one of the most horrifying experiences, very grotesque and the reality of it is often not communicated properly. kat

  18. CKS says:

    Hey Kathy, just discovered your blog, and it’s safe to say that the power of your writing is amazing. I’m following. My mother is 60, and I have a lot of worries regarding the future and her mental health. She often complains of memory loss and a lack of focus, but I look at her unhealthy eating habits and lack of physical activity (if that can — or could have — at least stall the worst thing that could happen at all?), and that scares me to death. Her knees have almost deteriorated to the point where she’s not able to walk around very well (she’ll need reconstructive knee surgery eventually), and her memory seems to be getting worse by the year.

    I know that I’m sitting here, whining about it, but it just scares me, you know? Maybe it’s rational, or maybe completely irrational, but I’m in my early 20s, and no stranger to loss. She’s the only parent I have left (dad died when he was 49, and I was a young teen), and I can’t stand worrying (although I hypocritically do it all the time).

  19. Peg says:

    My mother has dementia, and it’s only been 3 weeks since I was told she couldn’t be alone anymore. I have 6 stents in my heart, all after I had a quintuple coronary bypass. Needless to say, I’m not well. I lost my sister in 2009 and my beloved daddy died of vascular dementia in 2010. Now, I cannot believe I’m going to have to deal with it again, with virtually little help. My mom has always been difficult, spoiled, and stubborn. That is getting worse; she keeps me up all night at times, is argumentative, lies, etc. I had to leave and come home this morning, because she had pushed me to the point of no return. I feel guilty, but I don’t think I can take care of her. I’ve been trying so hard since my dad died, and it seems nothing I do is ever enough. I’ve given all I can financially (my husband is only one working,) emotionally, and physically, I’m going to have to put her in Assisted Living or something, and she won’t go voluntarily. I’m at my wits end.

  20. thank you for your note. It sounds like AL is the best option… i know it’s not easy, but you also need to take care of you. I can completely empathize with where you’re at… doing the best you can with little support. at the end of the day, you need to do what sits well with your soul. i wish you the very best… just remember to take care of you.

  21. Hi, I’ve nominated you for the Sunshine Award. Feel free to accept or decline. No pressure, no worries.

  22. Wow. Thank you so much! I appreciate it!

  23. kimjoy24 says:

    Kathy, ditto the above. I’ve nominated you for The Sunshine Award as well. I’ve always found your writing to be raw, poignant, real. I also think it’s important to read the experiences of younger caregivers,

    http://memoriesproject.com/the-alzheimers-and-dementia-community/

    Joy

  24. Katy says:

    Thank you so much for your blog. My mom has been a nurse for 30 years and tested out of a full year of nursing school. She is now 59 years old and has been diagnosised with dementia. She has no job now, no insurance now…
    I work in the medical field as well so there are no rose colored glasses for me to look through. This is worse case for my mom, my sister, and for me.
    I know how ugly this is going to get. It has already taken my mom’s dignitity. I know what happens in the dementia wards…
    For the first time in my life I am questioning my faith…
    For the first time in my life I really do not who I am praying everynight to.
    The God I was taught to love is a caring, loving God.
    Why do this to a women who has given the best care to expectant mothers and babies for over 30 years?
    Thank you for your blog!!!
    I need it, I have no where else to go…
    Katy, Wichita,KS

  25. Thank you so much for your note and support. I am so sorry to hear about your mom. Please let me know if you have questions. kat

  26. Thank you SO much! WOW!

  27. annsamuelson says:

    My mother is 83 and I have clenched my jaws for a number of years, so afraid that she would kill some one while driving. She finally could not look good and hide it anymore, she was given a third cholesterol drug, in addition to Lipitor and Crestor, it’s called niaspan , she took it for 4 days became very ill, quit taking it on her own, I took her to ER. She lived alone, and after 5 hours in ER she was not able to complete a sentence. She has had three femoral bypasses and a carotid bypass. I will not want this for myself, it has all fed into my mothers extreme denial re aging. I had to take guardianship last week, an awful experience to go through. I question attorneys and drs who don’t consider a persons family and the possible long term outcomes…I am weary…reading this reminds me that I need to get back to better self care, now that I have her placed in adult foster care.. Thank you for sharing your story…

  28. Erin Burns says:

    Kathy,
    I wanted to thank you for sharing your experiences with your Mom and her dementia. Similarly, my mother, 63 years young, has been diagnosed with frontotemporal dementia. Her disease’s progression (or rather, her regression) as well as my experience with helping care for her, eerily parallels your narratives. In a way, it is a relief to know that there are others out there with similar experiences, although I don’t wish this on anyone. For me, the hardest part is grieving for my mother while she is still here. Keep up the good work.
    Faithful follower,
    Erin Burns

  29. Janie says:

    Isn’t it amazing that science can’t even figure out how to fix this problem that seems to be on the rise along with other brain problems. I thought your mom was so cool & danced really good. I bet she was alot of fun when she was well!

  30. Susan says:

    thanks for the website.. i have one too.. have yet to record the ugliness of dementia.. what i learned was that my mom is angrier and more spiteful than ever before. She just called out of the blue to ask me who is feeding me bullshit and why i am not calling her back.. it is all in her demented mind that all of her kids are against her though we have spent the last year and half trying to help her.. it comes and goes.. i can’t take the way she berates my brother who has done the most for her.. I don’t want to call her back.. ever.. but i do.. and listen to her rant.. the paranoia, the ridiculous, the blame, the anger, the agitation.. I remind myself she is not who she used to be.. she is worse due to the dementia.. somehow it seems now all of the truth has come out and it hurts.. it just plain sucks. i just tried to return her strange angry phone call and now she is not answering.. i am in for a long sleepless night of anxiety. I need sleep as i am interviewing for a new job and trying to live my life.. i am 3,000 miles away from her.. yet she is in my head… and it sucks. i need to work on my website and update my feelings. I refuse to spend money to a shrink to go over the pain.. if you have not been thru this.. you can not know what it feels like. thanks again for sharing!

  31. I’m sorry you’re going through such a difficult and painful time. Blogging helps… it’s a good way to vent and maybe you’ll help a few folks along the way.

  32. Jamie says:

    Kathy, I have so many things that I want to say to you in response to your blogging. You are an incredible human being and my heart is right with you, as a caregiver and also personal survivor, and trooper. There are literally too many words to type here to express the respect I have for you. You are blessed to have one another, and you are 500% correct. Letting go is all we can do. Big hugs and blessings to you.

  33. Thank you so much for your incredibly kind note of support. Thank you, thank you, thank you. Blessings to you too.

  34. My Mom is 70 and doesn’t know who I am but is a sweet, kind gentle person still. Can barely speak. Cannot be left alone. You are writing my life. I am beginning my blog and it has been helping tremendously. Even more helpful to find blogs like yours and not feel so alone. Thank you.

  35. Susan Jacobs says:

    Kathy, my mother died in September 2002 after suffering more than a dozen years with Pick’s disease. She was only 60 when she died but she had really been gone a long, long time before the day she took her last breath. As my mother’s dementia progressed, it felt like I was watching a piece of ice melt and she was the ice. She was still there but in a form that held little real resemblance to the person she had once been. Pick’s was a relentless robber who took something from her each and every day. I happened upon your web site and wanted to say thanks for documenting your journey with your mom. I wish I had documented my mother’s experience but didn’t. Bless you and your mother.
    Susan Jacobs

  36. I am sorry for your loss. Thank you so much for your note.

  37. HI Kathy,
    I wanted to let you know I nominated you for the “One Lovely Blog Award.” You can go here to see the details and what comes next…. Keep up the great work! http://alzheimersspeaks.wordpress.com/2012/11/30/one-lovely-blog-award-alzheimers-speaks/

  38. Thank you so much!!!

  39. julie says:

    Hey Kathy i just stumbled onto your page. Hits close to home. My mum was diagnosed as she just retired in 2010. I had just turn 30. Its just me and my dad taking care of her. My sister lives three hours away so i feel like i need to be there all the time. Its funny how no one seems to understand this desiese. Her family kinda abandoned her. Its quite sad and maddening at the same time. Now we’ve just placed her in a hospice here and we are pretty damn lucky , cus she is getting great care yet its at a even greater cost. All my parents savings are going towards that.
    When i first realize what was happenning i called the Alzheimers Ass here in montreal and was shocked and surprised to hear that really FTD is not something they have much information on. I had to read alot of info online and watch informational dvds. Still every case is different.
    Mum was always a lil sweet lady as it progressed she would swear at my dad , tell him he was no good ( my parents have been together their whole lives) things i never heard from her mouth, then came chain smoking and listening to music all day sitting on the couch( when the cd would stop she would turn the radio on and sit back down little did she know she was listening to static.
    Then came leaving the house in the middle of the night…..calling me at all hours thinking i was at work.
    Then came hardly talking …….not recongnizing us……..and trying to eat rocks……
    hitting us …not showering…..keeping her winter coat on in the house for hours. ….it became to much……
    She never knew she was sick………is that a blessing …. i just dont know…
    Anyways i just want to thank you for putting up this blog……makes me feel not so alone……:)

  40. My Mom has Alzheimer’s and I’ve been an only child since I lost my sister to an accident several years ago. Mom has no idea who I am and Christmas was hard this year since she seems to have progressed a little further along this horrible path as of late. Worried about what’s next and trying to find some moments of joy but it’s so hard. I’m so glad I’ve found your blog. You’ve written so many things that I think. Thank you for writing.

  41. Sue Paul says:

    Hey Kat, what a beautiful blog. I have been an occupational therapist working with Alzheimer’s and dementia for 20 years, but have recently taken up a torch for FTD and Early Onset AD…. probably because I see the disease as affecting my peers now that I’m in my mid 40s. There are no easy answers, but I love how you are sharing your experiences and knowledge with the world. Keep it up!

  42. Deb Cavitt says:

    I am just beginning this journey with my Mom. Your words help.

  43. bunkodeb says:

    May God bless you for sharing these personal thoughts and experiences. I am just beginning this journey with my Mom. Your words give me some understanding and insight, which is a great gift…Please stop by my Blog to say “Hello”. ~deb
    dink83.blogspot.com

  44. Thank you for your note and support.

  45. I’m glad they help.

  46. I am glad the blog helps and I wish you much luck on your journey.

  47. Christine says:

    Hello, I found your website when in a moment of near despair I googled “why won’t my demented mother change her underwear.” Thanks for your blog, it helped a little with the moment of despair. Mom’s been living with me for 2 years, including a 4 week stint at rehab for a fractured pelvis, and packing up her house and moving across the country with me, and at least 5 hospitalizations off the top of my head for medical reasons. I’ve been coping with it so so, but now I’m headed over the cliff and afraid I’ll be on antidepressants soon. What I want to know is how on earth do you have the time, let alone the emotional energy to meet and date a guy for 4 months?

  48. thanks for your note. I am glad you found the site and I truly hope it helps you.

  49. Came across your blog and I’m happy I did. You present a very real look at being a caregiver. Very honest. I appreciate honesty! ;) I was a full-time, live-in caregiver to my Grandmother. I did this with my husband and our toddler. I was in my early 30’s. Not the typical is it?! Anyways, bravo on a great site/blog. I look forward to reading more. I too have a blog. It’s attached to the business that I started aimed at helping to improve communication amongst caregivers and those living with Alzheimer’s or related dementia. Visit if you will @ http://www.caregivercards.biz. There you will find the blog link as well. All the best to you!

  50. Jay Saro says:

    I first want to thank you for all the information you’ve provided. I am a Navy veteran who decided to leave the military to follow my passion in working with seniors. I became the CFO of a large independent living facility and quickly came in contact with the effects of dementia. Nearly 70% of the residents living at my facility either are in a pretty advanced stage of dementia or are beginning to show signs and having a hard time realizing it. I have watched nearly 120 hours of dementia 101 videos and read till I found the end of the internet. I recently came across a program called ” It’s not too late” http://www.in2l.com and was impressed with this tool. I think this tool and triggering memories will help my residents slide into the realization and be better able to cope. I am convinced that if we empower them that we will not only learn but be able to better care for them. I have been looking for grants to be able to procure this technology and hope to soon have it in our facility for our residents.

  51. Greetings Kathy,
    I recently moved to New Jersey from California for a promotion working in education this January. Since my move my mom has been 51/50, due to she has been having memory lapses also suffering from depressions. They have not giving her a diagnosis; however doctors mention your mom will need 24 hour care. Since I am 3,000 miles away my older brother in California has been doing the best that he can with keeping up with my mom. He has giving me grief about moving away saying that I knew her health was declining and that I am running away and he has a family to take care of. This hurts so much. Over this past weekend my mom drove herself to the hospital because she felt something was not right, the only thing is she can’t remember what why she went to the hospital. Since being in the hospital for three days they decided to send her to a nursing home unannounced to us, in which my mom was scared wanting to go home. My mom has always been the type to misplace things even when we were younger and has suffered from depression for a long time seeking therapy as long as I can remember. So I am having a hard time accepting if this is actually the onsite of dementia due to my mom has been through tumultuous circumstances ranging from being shoot as an innocent bystander in Oakland, CA in 2011, death of two sisters and best friend within the last two years, me moving to the East Coast. Right now she has good conversations with me sometimes repeating same phrases, she cannot for the life of her remember her day care worker that comes into her home every day to take care of her, it has been two years straight she has forgotten my birthday, she forgets that I live on the East Coast sometimes asking when I am coming home even though I just moved out here, so heart wrenching. I hate to prepare for the worst, but unfortunately it looks like I am going to have too. I debate moving back home to California, due to it has been my dream to live out here in Bloomfield, NJ on the outskirts of NY. I am so perplexed people tell me to live my dreams others say I need to come home with only being out here for six months not even completing my apartment lease terms and now my girl jus got a new job in NY……..SO STRESSED….Thanks so much for listening. Take care, BLESSINGS!!
    OMari Lockhart

  52. Sandra Ross says:

    Excellent blog! My mom died August 14 of last year (nearing the one-year anniversary) and, although I miss like crazy the person she was before the vascular dementia, the Lewy Body dementia, and the Alzheimer’s Disease, as well as congestive heart failure and a severe hearing loss as well as macular degeneration (all of which impacted the brain diseases), I am glad she is not suffering anymore.

    Immediately after her death (my dad had died almost 14 years earlier and I took over where he left off, although she was more independent until 2010), I began our family memoir, which has just been published, entitled “Fields of Gold: A Love Story” (available on Amazon).

    After writing this book, I decided to share my experience and the lessons I learned as a caregiver and wrote “Going Gentle Into That Good Night” (also available on Amazon). I haven’t seen anything like it and I remember the hours of research and wrestling to figure out how to do the right thing for and by Mom. The plethora of books out there simply did not have the practical and real-world information I needed RIGHT THEN. This book is an overview of what i learned.

    I have a companion blog (http://goinggentleintothatgoodnight.com) and have started a Facebook group for caregivers of loved ones with dementia, Alzheimer’s Disease, and other age-related illnesses.

    My prayers and thoughts are with you as we have the bond of common experience, common heartache, and common love.

  53. Mary Buck says:

    Hello, Kathy! Reading your blog is like finding a lit candle in a huge cave. My mother is 82 and is in the stage of shrieking and screaming. The nursing home she is currently is has asked me to remove her and at this point, I have not found a location that will take her. She has been to a behavior center 4 times and their efforts have not found an acceptable solution (either through medications) or added-on sitters who try to comfort her or just be there for her. The families of the other patients have complained she keeps their relatives awake at night and so I can not expect one patient to disrupt the rest of them. At this point, she would have to move from our area to a drive anywhere from 2-1/2 hours to 4 hours one way. Her health issues will not allow us to have her back home and there is no way they can tell us when she will stop shrieking, but she will eventually do so and we are told it will go into crying (and my mother is not a shedder of tears and this is more frightening than the screaming) or silence (my beautiful mother who never knew a stranger). My siblings and I have bounced things back and forth, shed torrential tears, said accusing things to each other, read books, sought therapy and prayed; even begged for prayers from our church and her friends and somehow, they seem to fear that by doing so, they too will be afflicted. Her best childhood friend cannot bring herself to visit her and I do not blame God. If it weren’t for my faith which seems shaky at times, I believe there is a reason for everything, why my father (the only love of her life) died first; the rest of our family has to deal with sometimes showing him more love and being there for her more than ever. It has to do with our growing to love each other more and reach out to them when others turn a deaf ear. I am not a good write and have not had the courage to voice my frustration, my fears, my confusion, my anger but can only imagine how much more horrible it is for her. The thing I am angriest about the most is the failure of being able to find a place that will take her in and care of her as we cannot. I will not forget your mother and I ask that you add my mother, Mary Catherine to the seemingly endless numbers of people who are dealing with this. Thank you and God bless. Mary P Buck

  54. Lonna says:

    I love your site. My mom was officially diagnosed with early onset semantic dementia. You give me solace that there are other, younger people experiencing the journey. I’ve started a Facebook page for us!

    https://www.facebook.com/bethyshouse

  55. ang says:

    thank you. I am 30 and live on Long Island I have been mom’s caregiver for 3 years. Thank you for this page.

  56. Jessica says:

    Thank you so much for making this blog. I am 18 years old living with my mother who has been affected by Frontotemporal Dementia for 6 years now, and reading your blog gives me a sense of companionship in my worst days. THANK YOU!

  57. alexiscibranolmsw says:

    Kathy,

    I now am the facilitator of the Young Adult Caregivers group at the Alzheimer’s Association NYC. I am a social worker by education and training and decided to develop a career in geriatrics and dementia care – I stumbled upon your blog because I am developing one of my own and was scoping out what already exists. I feel extremely blessed to be able to do the work that I do so I wanted to expand it to a larger audience. I wanted to appeal to people who might not really understand that millions of other people are in the same style shoes, just a different brand. OR to those who have been reluctant to reach out to a support group. If you ever find yourself back in New York City, we still exist, and each and every member is still a rockstar. I hope that you and your family have been able to find peace on the unpredictable journey through this disease.

  58. Thank you. The ALZ support group in NYC was invaluable and I still keep in touch with many of the members.Thank you for finding me.

  59. Thank you and thank you for your support.

  60. Cindy says:

    I’m sitting in bed like a zombie after I just signed the contract to move my Mom into assisted living. I have not slept for three months because of her violent behaviors and many, many visits by ambulances and police, finally culminating in a month-long stay in the psych ward. I had to abandon her in the ER to finally get help. I am keeping my fingers crossed that she will fit in at this facility, but I have many doubts. Anyway, thank you for this blog. I feel less alone now that I have read what could be my own story here. Thank you for the work you have done and to everyone who has posted. I am so tired. I promised I would keep her in her own home as long as possible and I did.

  61. Stephanie says:

    I just have found this page tonight, Thank you God,!Finally someone knows where I’m at right now.. My mom was diagnosed with Front-temporal dementia vs. Lewy Body dementia in 11/2011 after many trips to neurologists who thought I was a nuts and my mom was depressed and menopausal, at the age of 49, we were finally diagnosed. Now at age 52, she’s completely bedridden, incontinent and barely verbal. At one point in my life I’m lost for words, she no longer calls me by name although she occasionally knows Im her daughter, I have found that anyone I talk to always feels sorry for me, I don’t need that! I need to know that I’m gonna survive this and not lose my sanity, cause I have two small kids of my own and a full time job! I love my momma dearly and I definitely needed to read your blogs and testimonials ! Thank you!

  62. JodiMelsness says:

    Great blog Kat! I also write about my mom at The Lemon Bar Queen. Can’t wait to follow you!
    Jodi

  63. Thanks for finding me!

  64. Thanks and glad you found me. Stay strong… one thing I know for sure, it does get easier… time is a wonderful thing. Best of luck and thanks for reaching out.

  65. Sounds like you’ve been to hell and back. I hope you find some peace. I’m glad you found the blog.

  66. Tim Randt says:

    Kathy
    I am crying as i write this. were are going though the same run around that you went though. we are talking to the beatitudes on Monday hopefully we can get. I am the spouse that has taken care of her but can not do any longer. we also had her into a ward where they just put her on drugs and made her look like a zombie. i wish i would have found this blog before than. And my daughter lives in NYC she is in the media News . My wife is 61. Hopefully we can meet some day Thank You Tim

  67. So sorry Tim. I wish you all the luck and hopefully I;ll see you at the Beatitudes. Good luck with that process and let me know if I can help.

  68. Marie Marley says:

    (Kathie, Thanks for posting my article! Best, Marie Marley)

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