Alone

[Irishgirl57]

Why does this disease make us feel
So alone? So isolated in a room full of people? Why can't I explain how I feel? Why does it come out wrong and I hurt people? Why do I feel so frustrated by the simplest of things like a change in plans or things don't work out?

I used to be able to be still and just let things happen. Go with the flow ... What happened to her?

I pushed to travel after 15 months of health issues and now I feel so out of place with family ... Like I don't belong. Nothing is as it was. Or is it me? But if I don't feel at home with family, then where?


Sent from my iPhone using Talking Point

 

[Caroleca]

Oh irishgirl...thought I should respond...just got on here and I know everyone in uk are mostly in bed. Sometimes one can feel that way without dementia!! I just want to give you a virtual hug..you are so very brave

 

[aprilbday]

Oh my gosh! I could have written these exact words!!! Ditto. I feel alone in a crowd of people who I know and love. They try to include me. I try to include me. It's easier to just quietly yield to the isolation....but ......
DONT
YOU
DARE!!!!!!!

Fight this evil! Stay in there. Smile. Laugh. Converse. Get in there. GO THROUGH THE MOTIONS AND FAKE IT UNTIL YOU CAN MAKE IT authentic. Dementia is a thief. Fight back! Don't hand it over without a fight. And come to win.

Never give in!

N-E-V-E-R!
NEVER!
NEVER!
NOT EVER!

Do not let this disease isolate you anymore. We can do this!!!

 

[Grannie G]

I know my husband felt the same .
He became unable to keep up with the conversation within a group, all laughing and chatting at the same time.

As a person with a hearing loss, what I say doesn`t hurt people but it can be the wrong response to a mis heard comment, so to come extent I know how it feels.

I avoid large groups. My husband avoided large groups. We are/were much happier just conversing with a couple of people at a time. It isn`t withdrawal, it`s a practical solution to enable continued communication.

 

[aprilbday]

Grannie-spot on! Until you feel it affecting you negatively -then, it's a thief. Don't you think?

 

[danonwheels]

I also struggle with talking in groups now but hadn't realised it was a "thing" before reading this.

 

[Grannie G]

Someone said “you are your own best friend “ and I really believe this to be true.

Whatever difficulty we have , if we are able, we need to modify the situations we find ourselves in so we get the best out of life possible.

No one can do it for us because no one else has the experience.

 

[jhoward]

That's all true (we're our own best friend etc) but at a certain stage (which I'm reaching) it gets harder to stand on one's own feet and take smart decisions.

To me, it's a horrid stage, because we know what's happening to us and what lies ahead.

I'm trying to use my so-called smartness to make some plans, talk to people and so on. It's kind of hard to admit that I have Alzheimer's (I know it shouldn't feel like a problem - I never mind saying I have osteoarthritis for example - but it does)

 

[Irishgirl57]

How truly blessed we are to have this place to come in to share our feelings no matter what they are, we are understood. I was told with another situation that there is a beginning, a middle and an end to every problem. With this illness, I have a hard time figuring out what stage I'm at.

Things have settle down for me here in Indiana USA. My wonderful sister-in-law created a comfortable place in a back bedroom for me to go get some peace ... Away from all the visiting family and "noise". I have even gotten my physical therapy walks in most days. It's all part of doing what's right and comfortable for me .... And things I do at home.

Today is our last full day, we are going out to lunch, and then going to dinner at my nieces house. Trying to stay in the moment and enjoy the journey. Tomorrow will be a long day of travel, but today is the last full day. we are going out to lunch, and then going to dinner at my nieces house trying to stay in the moment and enjoy the journey.

Tomorrow is a long day of travel back home to Florida, but with prayer, meditation, medication and my husband. All should go well.

So thank you to all who are on this journey with me. How blessed I am by you all ...

 

[aprilbday]

Irish-
I am so very proud of you right now!

 

[ossie10]

the feeling of being alone(even in a large crowd) is one of the hardest things to cope with.I was outgoing/sporty type ran all the kids football teams and events,now i sit alone and on the verge of giving up.
My eldest son is great but i feel such a burden to him,my support workers are also the best,but at time i shut my eyes at night and pray not to wake up.I know its selfish of me and i am not in anyway on the home straight of the illness,but i think that what frightens me(even being an ex boxer i never thought i would be afraid of anything)A couple of night ago while going to bed i didn't even know how to turn the alarm clock on,its the same clock i have had for years how does that make sense?
At 56 i know it sounds strange all i want is a cuddle from my late mother or a word of advice from my late father.Sorry for long winded piece but hate going on at my son about this.Thanks again for listening

love ossie 10 xxx

 

[Grannie G]

That's all true (we're our own best friend etc) but at a certain stage (which I'm reaching) it gets harder to stand on one's own feet and take smart decisions.

I do apologise J. I`m not making light of it and dread to think how I`d feel if it was my challenge.

Of course it will get harder to stand on one`s own feet as the illness progresses and my hope is everyone has someone they can rely on for support .

Irishg, it sounds as if you have that in spades.

 

[The Chewtor]

Jhoward, Ossie & Irish I can connect so well and so easily with what you are saying. I know we are all on a terrible, weird, differing journey but some are treading on closer paths than others. maybe my age at the start or my outlook or my craving to stay so very physically active is what clicks with your story, i do not know. I feel your pain as much as I imagine the pain of others. not sure what it is i want to say or how to say anything except maybe to say that here, you are not alone.
I am having a bad week but without them i would not know when i was having a good week?????

stay strong and stay posting good and bad days. we cannot help but we can try to share with each other.

Wayne

 

[jhoward]

the feeling of being alone(even in a large crowd) is one of the hardest things to cope with.I was outgoing/sporty type ran all the kids football teams and events,now i sit alone and on the verge of giving up.
My eldest son is great but i feel such a burden to him,my support workers are also the best,but at time i shut my eyes at night and pray not to wake up.I know its selfish of me and i am not in anyway on the home straight of the illness,but i think that what frightens me(even being an ex boxer i never thought i would be afraid of anything).......
At 56 i know it sounds strange all i want is a cuddle from my late mother or a word of advice from my late father.Sorry for long winded piece but hate going on at my son about this.Thanks again for listening

love ossie 10 xxx

Not long-winded at all, ossie10. A great expression of what it feels like for us - so important for carers, medics etc to know and understand. The more they know and understand, the more relevant care and treatment can be.

 

[aprilbday]

Hi Irish
How are things today? It's hot here!
I am ready to go back to work. I don't know what to do with myself. Too much time on my hands!!!

 

[Irishgirl57]

the feeling of being alone(even in a large crowd) is one of the hardest things to cope with.I was outgoing/sporty type ran all the kids football teams and events,now i sit alone and on the verge of giving up.
My eldest son is great but i feel such a burden to him,my support workers are also the best,but at time i shut my eyes at night and pray not to wake up.I know its selfish of me and i am not in anyway on the home straight of the illness,but i think that what frightens me(even being an ex boxer i never thought i would be afraid of anything)A couple of night ago while going to bed i didn't even know how to turn the alarm clock on,its the same clock i have had for years how does that make sense?
At 56 i know it sounds strange all i want is a cuddle from my late mother or a word of advice from my late father.Sorry for long winded piece but hate going on at my son about this.Thanks again for listening

love ossie 10 xxx

Ossie... Thank you for posting. It is so important for me to know the others are going through some of the same stuff I am. Not that I want others to have this illness, but in reality, we aren't alone. Because of you, and others like you, I feel totally at ease sharing what's really going on in my life. Thank you and everyone else, you all are like a warm blankie of comfort

 

[aprilbday]

Hi Ossie

I just read your post. May I offer a huge hug? May I lend an ear? I understand how it feels to not want to burden anyone. You don't want to even talk about how you are really feeling because you don't want to burden others. I understand that so much. My daughter is kind but I do not want to overburden her with my issues which sounds like ungrateful complaining I am sure... But if only there was someone to talk to without burdening them!!!!
Please don't continue to pray for it to be over. I pray that you will have some laughter in your life today. Some reason to giggle or to smile. I do pray this for you.
It was surely disheartening and downright depressing for you to try to set the alarm on a clock you've been setting the alarm to for years! And frightening I bet! But here...let me share this with you.....I tried to open the garage door with my credit card the other day! !!!!!Now, yes...at first it -after that was over-was alarming...but now.. I find it hilarious! And I laugh.
Please feel free to laugh at my stories that I share. It really can be funny at times when you take a different view! Yet I know the reality-but sometimes I just laugh at myself. Just because I can.

 

[caqqufa]

I visit this site and am thankful for it although I don't have Alzheimer's/dementia, because my husband has. I would like you to understand that when you express yourselves, whichever way you are feeling, you are not being burdensome. Although my husband can be lovable and affectionate he was never expressive when it comes to emotions, when they are not positive, as he considers that a weakness ;cause guys are tough (apart from the burden bit); so most of the time it's guesswork for me. Very often it's this site that helps me to help him. We as carers need to learn about the illness, and who better than yourselves can tell us what you are going through and teach us how to support you and cater for your needs. Please understand that. You are not burdensome. We need your moans and groans, they are very valuable to us carers, and doesn't it feel better when you press the 'submit' button!
Big HUGs to all of you xx xx xx

 

[aprilbday]

Caqqufa

Thank you for your kindness. It is greatly appreciated.