Support

mac623

Greetings,

I enter this site with some trepidation as I am not used to sharing myself but feel that I am overwhelmed and need the understanding of others. I have recently been diagnosed as having Alzheimer Dementia and REM behavioral disorders. i must have had these a while since I have been symptomatic for some time. I know the final outcome of theses diseases and it frightens me. I try to discuss this with my family but all they keep saying is that they'll set me in a nursing home. I have been in 3 rehab hospital in 2003 alone and they turned disastrous and going into one full time rattle my cages.i just feel they have given up early in the game
Has anyone else encountered this challenge? Well. my time has been long hard having been sick a good part of 30 years pRtly due to a volunteer firefighting accident. This is a closure on a zany yet enjoyable time.

2dogssing

https://alzconnected.org/discussion/67891/support

I'm very new. I don't think I'd like hearing that I would just be put in a home. My daughters did not respond well to my diagnosis. They wanted a 2nd opinion. They thought there must be a mistake. I think the response that you received would be very painful. My mother hopes I get better soon. Am I way off base in being hurt? I'm hurt for the news you received. Hope I am empathizing with you correctly. Hugs

mac623

hi. it is very painful and I feel for sadden for the reaction that you receive. My wife was picking an argument this morning and I said that I would like for her to read the information that the neurologist sent home. Her only reply was that I can bite her. i hope as this disease advances she comes Round. THANKS SO MUCH FOR YOUR CONCERN.

2dogssing

https://alzconnected.org/discussion/comment/195627#Comment_195627

I just NOW saw 'reply'. Hopefully I will catch on quickly.

So far, if I told DH to "bite me" we would both laugh. He's a good help-mate. We both believe in laughter. We exercise our bellies by laughing. I appreciate all the positive comments from those that even know me. DH is good at compliments & I appreciate those from him as well

Iris L.

Welcome Mac. I'm sorry I could not respond to you earlier. Yes, receiving a diagnosis of Alzheimer's Disease is painful and frightening! I was devastated when I was told I had dementia at age 60 years, and I fell into a deep depression. What got me out of my deep depression was communicating with the members on these message boards.

I finally came to some decisions about my life and how I was going to approach whatever time I had left. I decided that I was not going to sit in a corner and wait to die. I was not going to be a burden to my family. I was going to do whatever it took to maintain my independence for as long as possible. And this is what I have been doing.

Some PWDs have a family or friend care partner. I have neither. My two closest friends abandoned me. So I realized I was on my own in this journey. Fortunately, the other members, both patients and caregivers, were here for me, in irreplaceable ways. I have found no better support than here.

Some PWDs have found it to be helpful to disclose their diagnosis to others. I have found it to be harmful to disclose my cognitive condition to anyone. Disclosing is something that is of a very sensitive nature. If you get a bad response, you can become devastated, as I was. Being abandoned by my two closest friends, who were like sisters to me, was part of my falling into the deep depression. I decided I would rather be in a caring facility with professional caregivers who know what they are doing, than to be around negative people who have already shown that they don't care about me.

Other new members have complained about their family members who are disbelieving and not supportive. You might want to read their threads. They might have had some ideas different from mine.

It is vital to have support in dealing with dementia or cognitive impairment, because you can no longer function the way you used to function. Everything will be different! I hope that you new members will reach out to each other and support each other. Keep asking questions. Make use of the resources available to you.

Iris