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Alzheimer's and understanding
Mleast
Posted: Saturday, February 16, 2019 11:37 AM
Joined: 2/9/2019
Posts: 4


Hi everyone! I just joined, I felt I needed some people in my life to understand what I am going through. It is hard being younger with Alzheimers, I found that when I was diagnosed and was no longer able to work, the people I thought were my friends disappeared. So I have become a diagnosis not a person any longer and I sit here most days alone and it is so lonely. We are in the process of getting a companion and I look forward to that. I am still functioning pretty well. I have good days, bad days, happy days and sad days. My husband takes good care of me right now and is my best and only friend. so I hoped joining a support group would ease the loneliness. Listening to others and knowing your not alone. Thank you for listening to my story and I look forward to support and hearing you.
Smilesyourway
Posted: Saturday, February 16, 2019 2:58 PM
Joined: 1/11/2019
Posts: 70


Welcome, welcome.  Your story is my story and many others you will find out.  I was diagnosed 18 months ago.  The hardest 18 months of my life, losing relationships, going through the depression and anxiety as well as fear or your own mortality.  We understand.  I spent most of those months researching, getting meds adjusted and getting my paperwork in order for my family.  I had to stop working 6 months ago which in all honestly helped greatly.  The stress of work was instantly gone. 

Yes every day is a new day.  Will it be good will it be a bad day.  My husband is my rock currently too.  I'm sorry you are having to go through this too.  Hugs and peace.  Share or ask any questions that come to mind.  There are many out here that have answers or have experienced the same things. 

Hugs,

Smiles

 


Mleast
Posted: Saturday, February 16, 2019 3:54 PM
Joined: 2/9/2019
Posts: 4


Thank you so much! We are very similar and it is a comfort to me that I am not alone after all. Hugs and peace to you as well.
Iris L.
Posted: Saturday, February 16, 2019 3:59 PM
Joined: 12/15/2011
Posts: 18333


Welcome Mleast.  As Smiles says, being abandoned by friends is common.  I was abandoned by my closest friends when I talked about my memory loss.  Nowadays, with other friends and with new friends and other people that I meet, I don't mention memory loss.  

 

If anything comes up, I blame it on systemic lupus.  Other PWDs (persons with dementia) have had a different experience in disclosing their dementia.  I think disclosing should be on a "need to know" basis.

 

I also relieved a lot of loneliness by posting on these boards and visiting the chat rooms.  I attend local senior groups and local support groups.  I attend a Memory Club.  Socialization is important, and we have to find new ways of socializing.

 

Iriis L.


Mimi S.
Posted: Sunday, February 17, 2019 12:35 PM
Joined: 11/29/2011
Posts: 7027


Welcome to our world Mleast. I'm so glad you found our site.

Being diagnosed before age 65 is not common and so locally it is usuall difficult to find a soul mate. That is the beauty of this site.

You might want to get in touch with your local Alz. Assoc. (Call our help line 1-800-272-3900. ) Call during normal business hours. The office is apt to be closed this Monday because of Presidents Day Holiday.

Do ask about the DC Spring Forum. It's a great place to meet others in Early Stage and many of them will be Younger Onset. Also, getting involved with your local Assoc can be good for you and the local.


Dave4Now
Posted: Thursday, February 21, 2019 4:35 AM
Joined: 11/21/2018
Posts: 5


The good thing is you recognize you need help and you came here to find it. Being Proactive to keep yourself going is important. 

I got 'officially' diagnosed in August, but we knew something wasn't going right for about 2 years prior. So my official Diagnosis was at 49 but I was aware of the problems and looking for help since I was 47. 

My friends haven't abandoned me, but they just can't comprehend it. 

The surprise for me is how poorly my family has been at being supportive. They don't want to acknowledge it. They don't ask how I'm doing, they don't ask how I'm feeling. It's so awkward when my parents don't say anything about what I am dealing with, and then when I visit them their neighbors ask me how I'm feeling. My parents lost a child 40+ years ago, and clearly they aren't able to deal with the thought of losing (mentally) another one. 

My wife is as supportive as can be. But I can already see that my mood swings are overwhelming her. 

But finding others that understand, sympathize... and hopefully show you that they are worse off and you ain't doing so bad (LOL --- read that as dark sense of humor) is what helps us get thru today to see what tomorrow holds. 


Smilesyourway
Posted: Thursday, February 21, 2019 1:41 PM
Joined: 1/11/2019
Posts: 70


Hey Dave, welcome welcome. I know exactly what you are saying when you say your LO's don't ask or acknowledge the disease.  I went through the same thing and it was difficult because being newly diagnosed can be the time you struggle most.  It's the official time.....it's the grieving time, the depression, My family wasn't saying anything.  I finally talked with my psychologist and we decided to have a famiy meet.  A meet that with her as facilitator I could say how I felt and what I needed.  They were able to ask questions and share as well.  It was a huge success and happened right at my dining table where we were all comfortable (after she left we ran for a beer and wine).  I learned that they too were going through the entire grieving process as well.  Maybe something like that would help you as well.  Losing one child and the possibility of another has to be overwhelming for your parents.  I am 59 and have White Matter Disease of the brain, hence vascular dementia.  Stress is HUGE...........it has to go.  Stress causes anxiety, anxiety can cause depression and walla your symptoms have worsened.  We look forward to sharing out here. 

Hey very cool about your Mensa status. 

Smiles


Mleast
Posted: Thursday, February 21, 2019 3:18 PM
Joined: 2/9/2019
Posts: 4


Thank you, I appreciate the imput. Yes we do have to seek out socializing.
Mleast
Posted: Thursday, February 21, 2019 3:21 PM
Joined: 2/9/2019
Posts: 4


Thank you. My mom denies it. My brother died at 52 and she won't accept another loss. My husband as well is my rock, He has put up with every fit, tear and frustration. Take care of yourself.
Ideaman
Posted: Sunday, June 19, 2022 4:49 PM
Joined: 5/14/2022
Posts: 22


Hi everyone. My name is David. My DW is 76 and just diagnosed this week with Alzheimers. She has been having short term memory issues for about 2.5 years. It became much more frequent during Covid isolation. I think her fear and lonliness accelerated the memory loss.

We built an addition 12 years ago and on the first floor we set up space for a 10X12 bedroom, a full bath with shower, 30" wide doorways and the space is right next to the front door and the kitchen. So I am anticipating that she will move into that space once she can't phsically manage the second floor.

I am devoted to her and she knows I will do whatever it takes to care for her. However, I have so much to learn.Dont even know if I am asking the right questions...like

• What to expect in the next year or two regarding the worsening. I have a message in to our doctor on their practice portal. But I would be comforted to hear from some members here.

• Is there a sequential guide for new comers as to what to do to prepare for the eventual loss of skills and the need for at home support. There are plenty of websites that address this question but again, hearing from those dealing with difficult challenge would be most appreciated.

•Will I need to get a wheelchair?

• I am assuming I should start interviewing home care companies, assisted living facilities and fulltime care facilities to understand the guidelines and get their costs. I recognize the costs are very large. So at 76,  I will have to unretire and bring in some income.

I am so greatful for any guidance you can provide.

 

 


Jo C.
Posted: Monday, June 20, 2022 3:42 PM
Joined: 12/9/2011
Posts: 13459


Hello David and a very warm welcome to you.  The questions you have are valid and important. 

You have landed on a Forum, "Young Onset," that is not well traveled. I would like to suggest and invite you to place this wonderful first  Post on the "Spousal/Partner Forum." That is a Forum that is very well attended by spouses and partners and is very, very supportive.   You will get much good input there. 

Hope to see you there,

J.


Ideaman
Posted: Sunday, July 3, 2022 7:07 AM
Joined: 5/14/2022
Posts: 22


Thank you so much for the guidance!!

MMcFarlane
Posted: Tuesday, July 5, 2022 9:43 AM
Joined: 7/5/2022
Posts: 1


MLeast,

It looks like you have a furry friend to keep you company also!  I am in the same boat as you are with my wife that was diagnosed last December at 57 which was hard to get a Dr. to test her. She got lost driving and that story seemed to help get an appointment.

Her issues are more with the decision making part of the ALZ and following instructions. She has never been a social butterfly but had a handful of friends, mostly co-workers. I hope you have some family nearby that can increase visits. I'm sure it crushes your husband to know you are feeling lonely. I go back and forth wondering if I should quit my job, sell the house and live in an apartment so I can be with her all the time. I am happy to say she has a sister that is now retired also so she comes to visit more. My work allows me to work from home 3 days of the week so that helps.

I hope you are able to find someone to fill time when your husband cannot be there and you get along well and find new friends online.