Loneliness of Alzheimer's / Dementia

[alieje]

Hi, my name is Alice, I'm 66 yrs old and was diagnosed with Alzheimer's / Dementia a year and half ago. I hate knowing that I'm slipping into a dark abyss and there is nothing that can be done. I've been on meds buts they've quit working. These disease is a very lonely disease. People thinks it simply forgetting things but the disease is more, so much more. I wish forgetting little things was the only part of this disease.

[jaykay777]

Welcome, Alice. Thank you for sharing your feelings. None of us will ever know exactly how your life is, but your writing to us will help us understand you and the loved ones we care for. Do you live alone or with others?

[Lori56]

Alice maybe you should talk to your doctor You could be suffering from depression with your dementia They might be able to give you some med for depression which might help you not feel like your falling into a dark abyss I know it hard for people with out this disease to truly understand I think it's more about feeling so confused not only forgeting It also scary I will pray for you

[alieje in reply to Lori56]

Thank you. I've seen the doctor, I'm on Namenda and Aricept plus depression meds but they've quite working. When I started the meds the professionals said the meds work for about 2 years and that's all, it's been a year and half.

[Katiebethpdxsea]

Alice, I hear you. I was recently told I have mild cognitive impairment. I am 68. It's so much more than just forgetfulness... It's like I am loosing myself. Like pieces of who I am are dropping away from me and there is nothing I can do to stop the pieces sliding away from me.

I am trying to keep communication open with others but gosh it seems like such hard work to put what I feel happening into words. Sometimes I just don't have the energy to speak...and yet it's not exactly that it's just draining. it's that the words don't cooperate in my brain.

When I went to a neurologist he said some nice words, but there was no way to soften the message. I see it from the inside, as I feel sure you must too.

I have been seeing a naturopathic Dr who is also skilled in Chinese medicine. I am going for a treatment tomorrow. A new treatment for me. So I am in that wait and see and try stuff phase.

I hope you have someone who can advocate for you. I have my adult son who lives with me, but he has his own serious health issues. We run along ok for a while, and sometimes I get very angry at myself and at him. That's the frustration sparking and making me act out sometimes. Do you have that too?

I hope you have support close to you. Someone you can trust for now. It's so scary to envision what I have seen some others go through. I guess if I get to that stage, I won't realize it. Boy that's real scary.

If. I can offer any comfort...I am here. It really helps me to know I am not as alone as I thought I was. Keep talking and letting other people help you. Bless you. Kathie

[alieje in reply to Katiebethpdxsea]

You read my mind, I'm losing myself a little bit everyday. I use to be very patient, seldom angered but now I get angry at the littlest things and the angry get so bad it scares me. Its like I'm out of control and can't stop it. I us to have an amazing memory, I never forgot a name, phone number, address, nothing now I took find it difficult to talk with people, can't find the words I want, or trying to describe something or a feeling, can't remember names, places, or faces, get lost going to the grocery store.

I'm pretty much alone. My daughter died from Lupus, my son is across the country and the rest of my family is gone. I have friends but they have families and loved ones and most of them still work. I had an amazing career but I had to quit which I've never done in my life. I had so many plans for my retirement years but those are gone.

There is so much more to this disease then forgetting where my car keys or checkbook are. Well enough pity party for today. Feels good to not be alone with this ugly disease.

Have a good one, keep your chin up, and talk soon.

[agapepilgrim in reply to alieje]

alieje you sound like me is some ways. Losing who I am. Getting so angry out of control at the little things I used to shrug off and was able to cope by thinking it really doesn't matter. It's like someone else is in my brain screaming that it does matter. I threw the remote across the top the other day. I was always the docile peacemaker in the family, in the room, in the office, seeing the best in everyone. Not anymore. I have become the opposite. Research from MSAA tells me it is MS and PDA. My neurologist told me I have used up my coping skills after 60 yrs with MS and need to learn new ones. I told him I have too many damaged nerves to learn new ones. So he sends me to a neuropsychologist. Ok. Whatever. I am tired

[Eliqualls in reply to Katiebethpdxsea]

Hi my name is Elizabeth. I live in Friendswood Texas. It sounds like our stories are still very much the same. I used to work Drive do whatever I wanted to. But now that is all gone. I live with my son and his family. It has been a struggle on him and his wife. Neither understand the situation totally. I can't expect them to understand totally because I don't even understand we must keep each other. Our thoughts and prayers as we both know this is a devastating disease

[daddyt]

I do understand with some of you concerns. I was diagnosed with early onset dementia (FTD) frontal temporal dementia 4 years ago and PSP (Progressive Supranuclear Palsy). I never ever want to forget my family or friends... one of my greatest fears, but FTD affects your short term memory and executive functions rather than long term memory. There's fear, frustration, embarrassment and whole lot of other baggage that come along with dementias. This site's admin. is very knowledgeable and may be able to offer information, or speak to your concerns.

[myproblem]

Read read and read. I to have dementia reading helps dementia. Paul

[alieje in reply to myproblem]

I use to be an avid reader, a couple of books at a time going, but now I can't make it through a page before I forget what I just read. I get tired reading the same page over and over.

[myproblem in reply to myproblem]

Check with your doctor and medicine you take. nameone

[donnisjreese in reply to myproblem]

I haven't tried reading .. . it seems difficult for me to even read the newspaper. But I will try anything that might help!

[myproblem]

Read that helps with dementia. Paul

[Lori56]

I'm so sorry about your daughter My son pass away when he was 18 It been 13 years and still painful Is there anyway you could move by your son Does he know about your disease?

[Eliqualls]

Hi Alice I 60 years old. My name is Elizabeth I was diagnosed with Alzheimer's about 4 months ago. About 15 years ago my father passed away with Alzheimer's. Back then I didn't even think that I would have it. It's a silent devastating disease. I get lonely and wonder how much longer do I really have. I have only one son who is 37 with two beautiful grandchildren for me it scares me and hurts me that I will not be around for them as long as I would like to be.

[Katiebethpdxsea]

So good to read all of our posts. The thing I guess I worry most about is what if when I slip away to where I can't communicate, what if I am still aware inside my brain? It's an awful thought, that I might just sit here and be aware of everything and not be able to tell anyone that I'm still here? No one has been able to come back from there deep inside Alzheimer's and tell us what it's like. that's the big scary monster for me. Maybe we can tell everyone about it before it gets that bad? Like a living will.?

We could write down a pre-nupt. Sort of. Tell whoever will take over for us..what we are like, what we like, how we like to be treated. You know, like if I really hate a certain kind of soup, not to try and force me to eat it? Stuff like that. Like a readers digest manual to who you were and are and how you like your cornflakes?

What do you think?

[ChristianElliott Partner in reply to Katiebethpdxsea]

Katiebethpdxsea , this is a great idea -- a "How to manual" or user guide. Please share your ideas on main topics, and I will ask community members to chime in with their own topics.

All the best.

[jaykay777 in reply to Katiebethpdxsea]

Katiebeth -- I also think your idea of writing down "a pre-nupt. Sort of." is a brilliant idea. I'm trying to visualize what my mother would have told me before the mother I knew disappeared inside herself.

[Katiebethpdxsea]

Thanks Christian . I will put a draft together and see how it lands with the community. More later.

Katiebethpdxsea

[Katiebethpdxsea]

OK here is a swag at what I might like to have as my advance directive (pre alzheimers) contract. I tried to talk about categories (food, entertainment, social interactions, music, activities, and idiosyncracies).

Having been diagnosed with the first stage, or beyond, cognitive difficulties, I want to let whoever is taking care of me know some of my likes and dislikes. This is a guide for you to know simple everyday stuff about me that I may no longer be able to tell you about.

1. Likes and dislikes:

Food - nothing spicy. Peppers and especially hot peppers are not for me. depending on my physical abilities, I like soup, especially tomato soup. Also like grills cheese sandwhich. Hamburgers are always a favorite. I like 1 cup of coffee with lots of creamer (so it looks like a creamy light tan) with sugar, or if it's the sweetened kind of creamer that's best. Scrambled eggs for breakfast. No fried or hard boiled egg ever.

Entertainment - Funny TV shows, talk shows, news, cooking chanel, national geographic, HGTV, nature shows. I like to go outside and watch nature.

Talk to me - even though I may not be able to talk or maybe I don't make sense, I like to listen to conversation.

People - I like people. I like to watch people. Like in a shopping mall.

I like to draw, so you might give me pencils and paper. I love to look at magazines. I have always loved to read books.

I love almost every kind of music (no country). smooth Jazz and jazz fusion are my fav.

Even though you may think you know everything there is to know about me.. Some of the little stuff is what can make people uncomfortable.

Idiosyncrasies - I don't wear jewelry, and can't tolerate anything tight on my wrists. So no watch, bracelets or tight cuffs.I also have difficulties with loud noises - especially loud noises overhead.

Okay everyone on this blog... I took a run at what a pre-nip (sort of) might look like. I don't see any sense in being too detailed. Just simple everyday stuff that I find positive or negative. Please take What you like from this and disregard what you don't like. I would like to hear your ideas. Let's do something positive together.

Thanks, katiebethpdxsea, kathie

[Lyndaskitty in reply to Katiebethpdxsea]

I love your idea of a "caretakers manual". This is just what I need to add to my advanced directive. I didn't know how to express my needs but you have given me the means to do that. Thank you so much for your input.

--Lynda

[Lori56]

We could educate are caregivers on dementia care They really should take some classes and be prepared Most have unrealistic expectations of themselves The guide above would be so helpful for anyone who is involved in dementia care

[valeriegilstrap]

Hi Alice. My diagnosis is Essential Tremors with Cognitive Component. I don't fit the mold of a dementia but they say that's the best place for me to reach out. When I watched Still Alice I see myself. When I read your words and those that responded I see myself. It is so frustrating and hard for family to understand, after all, I look normal and adept at hiding my deficits. Thank you for posting.

[donnisjreese]

Yes, the loneliness is difficult for me as well. I've just recently moved to the community where my son and his family live to make the future easier for all of us. And I have not yet made new friends. It is so hard. But my family frequently visits or invites me to their activities. I am lucky!! And my time for social activities is now limited as I am striving to do every suggestion for changing my lifestyle to reduce the progression . . .exercise, changing diet, learning a new language (which is so slow as my memory doesn't cooperate!) But this online resource may help us help each other.

[jeffcobb Ambassador]

Alice; Greetings from the new kid on the block....I absolutely get what you mean; diagnosed with LBD last August but already....well I have tried to describe this to "normals" as if you are in a boat drifting farther and farther from the shores that represent the rest of the world...as you drift farther away, the goings-on there mean less and less, people are harder to understand and I can honestly see a point where you feel you have nothing in common with that world anymore, you can barely see it. So its important to me to figure out some method of communicating when the usual stuff fails like speaking and writing. What really drives that isolation home for me is when I hear a medical professional refer to my expressive aphasia and say something like "yeah, some days I don't feel like talking to others either..."

I want to take out a stick and hit them but it really drives the point home that they and you are not in the same universe anymore. I honestly don't know how much this will affect me; only child and made my own way my whole life, moved alot, etc so don't have vast familial roots to miss or a dozen friends to miss either. I will miss interacting in a meaningful way but hopefully will not die of loneliness.

[Di01]

Hi feel like im going crazy sleeping loads and my legs & throat dont feel good i get food stuck & frontal head pressure but doesnt feel like a headache i cant even do a simple job as my brain does cope i have a compulsive disorder to like im brain wont stop me from picking & smoking cant concentrate what so eva my head just doesnt feel like its working properly & that i have no hormones levels always feel weak in myself just want to kno now if this is a sign of dementia