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Norms' Battle with 'Loneliest Disease in the Entire World'
Myriam
Posted: Friday, March 30, 2012 1:26 PM
Joined: 12/6/2011
Posts: 3326


From Alzheimer's Daily News:


(Source: Western Morning News) - After the Government (in the UK) announced a doubling of the money spent on research into dementia earlier this week, one man describes what it is like living with the illness.

Bright, chatty and engaging, it's hard to reconcile Norman McNamara with the bleak diagnosis that casts a long shadow over his life. For the last four years, the 54-year-old has been coping with Alzheimer's disease.

McNamara, known to his friends as Norms, admits it is a daily battle - but one he is determined to win.

"People do look at me and they think there's nothing wrong with me," he said. "But they don't see it all. "They don't see me at night when I'm having hallucinations that I can see my mum and dad, or at 3 am when I wake up screaming and fighting to get out of bed. "It is the worst disease in the world. It is the loneliest disease in the world."

"Each Alzheimer's sufferer is different and at first, the medication I was on wasn't right for me," he said. "I lost nearly all my speech, I was staggering and I didn't recognize some members of my family. It was hard."

By and large, he remains optimistic about the future and views dementia as the major challenge that cancer was 30 years ago and HIV was 20 years ago.

On Monday, McNamara was sitting next to UK Prime Minister David Cameron at an event in London ahead of the launch of the Government's promise to more than double funding for research into dementia to £66 million ($106 million) by 2015.

"There are dark days," he said. "There are the days when I've cleaned my teeth with a razor and cut my gums or just put two shirts on. Then I have just sat down in despair. "I have been fighting this disease for four years and I intend to carry on fighting it until they find a cure."

Go to full story: http://www.thisissouthdevon.co.uk


Iris L.
Posted: Saturday, March 31, 2012 12:46 AM
Joined: 12/15/2011
Posts: 18354


Myriam wrote:


 

 

 

 

 

 

 

 It is the loneliest disease in the world."

 

 

 

 
 
  So true. 
 
Iris L. 

 



Mimi S.
Posted: Sunday, April 1, 2012 10:02 AM
Joined: 11/29/2011
Posts: 7027


Hi Myriam and Iris,


A good point for discussion.


"By and large, he remains optimistic about the future."


A good friend of mine is one of the big-wigs in the Aliz. Assoc. hierarchy, with whom I have discussed my perennial question of 'why me? Why am I having so much success holding this big monster at bay? He thinks it's my very positive attitude. I'm not sure he's entirely correct, but have conceded it's a big factor.


We have to get out in society for as long as we can. it's why I prefer to move to Assisted Living with a Dementia Unit when the time comes. I've visited my chosen place several times. The last time I spent most of it just sitting in the Dementia Unit. The programs that are available and used by the residents of the locked unit are amazing. There is no such thing as a row of wheel-chairs with dozing patients, propped around the nurses station. There is no nurses station!


In this particular place there is mingling between all levels. Thus if one is placed in the Assisted Living unit but is still able to go on certain field trips with the Independents, fine. 


And yes, sitting there will probably be like watching that movie this afternoon. She might be me, but not today nor tomorrow. Hopefully a long time down the road.


Iris L.
Posted: Sunday, April 1, 2012 12:10 PM
Joined: 12/15/2011
Posts: 18354


Mimi S. wrote:


 

A good point for discussion. 


 

"By and large, he remains optimistic about the future." 


 

A good friend of mine is one of the big-wigs in the Aliz. Assoc. hierarchy, with whom I have discussed my perennial question of 'why me? Why am I having so much success holding this big monster at bay? He thinks it's my very positive attitude. I'm not sure he's entirely correct, but have conceded it's a big factor. 


 

 
It's easy to remain optimistic and have a very positive attitude when you have love and support from family and friends, a strong medical team, and support from the Alz Assoc.  When you've been abandoned by your husband and friends and one doctor tells you you are "choosing to forget" and another doctor refuses to refill your memory medication and you can't join any patient groups,  it's harder.  I cycle between despair and wishful hope.  Sometimes I just want to give up and go live in the woods until the end. 
 
Iris L.   


bela
Posted: Friday, April 6, 2012 1:22 AM
Joined: 12/15/2011
Posts: 4122


From a patients perspective, why is it a lonely disease?  I would like to help my mom with the lonliness if this is accurate.
Iris L.
Posted: Friday, April 6, 2012 2:35 AM
Joined: 12/15/2011
Posts: 18354


Everyone is not fortunate enough to have loving caring people in their lives.  When the going gets rough people you thought were your friends abandon you.  Then you are alone.  That's it in a nutshell. 

 

Iris L. 


Myriam
Posted: Friday, April 6, 2012 3:16 PM
Joined: 12/6/2011
Posts: 3326


bela wrote:
From a patients perspective, why is it a lonely disease?  I would like to help my mom with the lonliness if this is accurate.
 
I think because it's impossible for anyone who does not have AD to understand what we go through, and because for whatever reasons (fear, ignorance, is it going to happen to me, etc.) people pull away and don't want to see or deal with it.

bela
Posted: Friday, April 6, 2012 6:51 PM
Joined: 12/15/2011
Posts: 4122


I so much want to understand what an AD patient goes through but my mom can't communicate very well so I just have to go by her cues.
Myriam
Posted: Friday, April 6, 2012 10:04 PM
Joined: 12/6/2011
Posts: 3326


bela wrote:
I so much want to understand what an AD patient goes through but my mom can't communicate very well so I just have to go by her cues.
Bela, that you came to this board (and hopefully to the younger onset AD board) to look for answers says a lot about your love for your Mom. 

bela
Posted: Thursday, April 12, 2012 10:48 PM
Joined: 12/15/2011
Posts: 4122


I love my mom dearly ......i want to do anything to bring her comfort and happiness if I just knew what it was.  So, I keep trying new things.  One thing for sure, she knows who I am and smiles and waves furiously when I walk into the room.  Maybe I make her happy.
GBee
Posted: Thursday, April 12, 2012 11:14 PM
Joined: 2/7/2012
Posts: 88


bela wrote:
I love my mom dearly ......i want to do anything to bring her comfort and happiness if I just knew what it was.  So, I keep trying new things.  One thing for sure, she knows who I am and smiles and waves furiously when I walk into the room.  Maybe I make her happy.

 

 

bela,  I feel the same about my mom, sometimes I just want to cry when I see her because I don't know what to tell her, or how to explain things to her.

Mom also is happy when she sees me coming in the door to AL.

Blessings,

G.


Mimi S.
Posted: Friday, April 13, 2012 7:15 PM
Joined: 11/29/2011
Posts: 7027


From the patient's perspective: When one can no longer communicate what one wants to, it is very  frustrating. 

And you keep telling your loved one that you love them. You give them back rubs. You take them for walks, How about an art museum. Come summer, concerts in the park, so when they are tired you can leave.

Do bring their grandchildren and greats to see them. Teach the little ones ahead of time what to expect.


bela
Posted: Wednesday, April 25, 2012 12:55 PM
Joined: 12/15/2011
Posts: 4122


For those of you with AD or other dementia, please tell us how to help our LO; anything will help us.  We dont want you or our loved one to be lonely or in need.  Thank you
always&4ever
Posted: Monday, July 9, 2012 9:28 AM
Joined: 6/28/2012
Posts: 151


Myriam...thank you for sharing this article.  I do not have AD or dementia, but my husband is going through something that is slowly appearing to be some kind of dementia.  Everything has been ruled out, now going to see a neurologist.  However, I come to this discussion board and the early onset board just so I can learn and can understand.  Like Bela I know I can never fully know what anyone is going through without going through it myslef, but I so desparately want to understand as much as possible.  Sharing stories like this really helps me.  Hearing what symptoms and trials and adjustments you are all going through gives me insight.  I thank each of you for sharing.
mish
Posted: Saturday, July 14, 2012 5:26 PM
Joined: 6/21/2012
Posts: 439


I agree and I am sorry  Iris and to all, my husband has not moved out YET  but emotionally he left a long time ago. he always had problems with illness  now   this dx and me. no, he cant handle it.  he is  in denial, or depressed.   he wont read about it- "it  is too depressing" wont go to support groups. etc.  and he dont know a computer.  he says things like :I have to realize you will never  do this.... and this... again. he has put me in a bubble. I have no family here, no friends  - and  I see him go further and further. now he goes in   his room, shuts the door and watches tv.   that is it.    he is tired or  has a headache if I try to talk.  the only people i have is  via  phone  or email- family and that is a   few.

it is a lonly place.  and thank God for this site and all of you.    


Iris L.
Posted: Saturday, July 14, 2012 5:46 PM
Joined: 12/15/2011
Posts: 18354


Mish, you have to have a live person to talk with.  Call the Helpline number and speak with the Early Stage Care Consultant.  I called the national Helpline # and was eventually directed to an organization for seniors in my area that helps people like me with no close family members. I now have a social worker who helps me individually. 

You can also ask if there is an Early Stage support group in your area.

In my area I attend a Women's Peer Support Group.  It is for women with any type of disability. 

The chat room is always available if you and another member want to chat.  There is a chat room just for patients.

Keep reaching out.  There are people around who understand your illness and how it affects you.  You are not alone.

Iris L.


dayn2nite
Posted: Saturday, July 14, 2012 5:55 PM
Joined: 12/18/2011
Posts: 3097


mish wrote:

I agree and I am sorry  Iris and to all, my husband has not moved out YET  but emotionally he left a long time ago. he always had problems with illness  now   this dx and me. no, he cant handle it.  he is  in denial, or depressed.   he wont read about it- "it  is too depressing" wont go to support groups. etc.  and he dont know a computer.  he says things like :I have to realize you will never  do this.... and this... again. he has put me in a bubble. I have no family here, no friends  - and  I see him go further and further. now he goes in   his room, shuts the door and watches tv.   that is it.    he is tired or  has a headache if I try to talk.  the only people i have is  via  phone  or email- family and that is a   few.

it is a lonly place.  and thank God for this site and all of you.    


Oh woe is HIM!  I'm sorry you are burdened with someone like that as a spouse.  Since he is going to move (I got that from your post), will there be a divorce coming?

 

Even if there is no divorce, have you seen an attorney regarding what your rights are since you are disabled and he is basically abandoning you?  Even if he's supporting you and/or providing insurance for you right now, nobody can predict the future or whether he'll eventually want a divorce (and you too compromised to request ongoing support).

 

I would also be very careful about putting him as a POA or a beneficiary of anything since this is his attitude toward the disease.  If he is living with you and won't help, he surely won't help after he moves out.


Iris L.
Posted: Saturday, July 14, 2012 8:42 PM
Joined: 12/15/2011
Posts: 18354


Mish, dayn2nite is right.  Be very cautious where your husband is concerned. 

You are in a vulnerable position. 

You must locate a person whom you can trust right away!

Iris L.

Geegee
Posted: Sunday, July 15, 2012 11:07 AM
Joined: 11/29/2011
Posts: 514


Mish, I'm so sorry you are dealing with this dx and your husbands selfish behavior.  Day2 and Iris have given you wonderful advice.  We are all happy 


you found us and this community can help give you sme of the support and friendship that you so desperately need!


Please call the helpline and ask for a care consultant.  Let them know your dx and lliving situation.  Ask them for any advice or guidance they can give you.  They are well qualified to give you knowledgeable direction and info.


Have you been in contact with your local chapter of  Alz. Assoc.?  They may be able to help you take the steps necessary to find a trustworthy atty. to handle your legal decisions.  Also, at the top of this page there is a "local resources" Selection.  Click on that for info in your area.


FTD Picks can be difficult to have and to care for.  The fact that your husband doesn't want to LEARN how to help you is such

 a detriment.  You definitely need someone to understand your behaviors and capacities.  


If you have a question or want personal replies, you can  start a new discussion by selecting it in this forum.


We are so glad you have joined us.  Please know you are not alone and we will help and be there for you...as much as we can.

(((((hugs))))).




mish
Posted: Monday, July 16, 2012 11:41 AM
Joined: 6/21/2012
Posts: 439


thank you for your help.  I have a contact person  from the ass.   but there is only 1 group in the area  and it is   for alot older people in far  different stages than I. (no disrespect)   there are a few caregivers groups in my  area  but again he wont go.  also he neverr has been my poa or anything else. he   never could handle  illness like i said, or financial decisions and he  doesn't like to read or know how to work computers.  he is more of a hands fix it guy. so no never my poa.

things have just gotten worse and worse.  at the last  MD appt   the MD was  very upset that  I weent alone and he was not there. so  he is getting a sw to hook me up with a counselor , (soon I hope).

and that's it.

it s all she wrote

thank you for being so kind. you really are nice people.


dayn2nite
Posted: Monday, July 16, 2012 3:12 PM
Joined: 12/18/2011
Posts: 3097


Again, though, whether or not you will eventually become divorced, WHILE YOU ARE STILL HANDLING YOUR OWN AFFAIRS, you need to see an attorney about this situation and what your rights are.

 

You are unable to work and you cannot just make an income if he decides one day to leave and not support you.

 

Something needs to be in place right now legally obligating him to do this---later will do you no good.  And if it causes him to become angry and leave, OH WELL, you're really no worse off than you were before saddled with a husband who won't help you.

 

I'm gladd the association is getting you a social worker.  You need that too.

 

 


Iris L.
Posted: Tuesday, July 17, 2012 12:10 AM
Joined: 12/15/2011
Posts: 18354


Mish, do you have any other family members that you trust who can help you?


Iris L.

mish
Posted: Friday, July 20, 2012 10:52 AM
Joined: 6/21/2012
Posts: 439


my md has a sw  that he  has  to help me but she only works  2x's a week- half days.  I called the assoc. the ass.  and we are meeting next  week.  but again no groups near me  and I dont drive far.   I do have a lawyer but now he is dating a famous celeb and is "out of the office now: lol alittle busy.  

he (husband) has been  out of the way. I  contacted a  counselor for him and she called him but no,   he doesnt need to air his issues out. (okay?)  

Iris- I trust my parents  (but they are out of the country)   and my aunt  and cuz (out of state). that is all.  the rest cant find the time for me.  so   life goes on.  I am trying the  best I can.    whether he physically leaves now or  not .  life goes on.  He has shown his  true colors and   that is   that.    I have to take care of me.   

thanks you  all again.  so much.

blessing to you all.


1skpearl
Posted: Tuesday, July 24, 2012 8:46 AM
Joined: 7/3/2012
Posts: 31


Alzheimer's is the sixth leading cause of death & there are currently no effective treatments. Please share this video and one thing that you never want to forget to help end Alzheimer's. http://www.youtube.com/watch?v=xeHTTonG6co&feature=player_embedded
Iris L.
Posted: Tuesday, July 24, 2012 12:06 PM
Joined: 12/15/2011
Posts: 18354


Mish, you seem to have people around you but no one is helping you. 

I worked with the Early Stage Care Consultant at the national office and with another Early Stage Care Consultant at an in-state chapter over the telephone.  I don't see why you have to meet in person before you can get assistance. 

Iris L.


mish
Posted: Wednesday, July 25, 2012 11:40 AM
Joined: 6/21/2012
Posts: 439


the sw called  from the md office  yesterday.  She asked me about my needs.  etc.      I  was explaining  that   sometimes   tasking  is hard for me because I get so distracted.   etc...  I  told her about  the need for  a support system,  counseling, , she gave  me a name and number, I asked about  health coverage  she was like  "I dont  know call".      very helpful.     lol. I put put it on my list.

next.


Iris L.
Posted: Wednesday, July 25, 2012 11:58 AM
Joined: 12/15/2011
Posts: 18354


Mish, I still think you will get good advice and support from your local Early Stage Care Consultant.  It would be good for you to begin to develop a relationship with her.

Iris L
.
mish
Posted: Friday, July 27, 2012 2:53 PM
Joined: 6/21/2012
Posts: 439


I do know her and I have talked to her, we were supposed to meet this week but her child is ill.  Thank you for your help, she is in charge of all outreach programs in the state.
Iris L.
Posted: Saturday, July 28, 2012 7:46 AM
Joined: 12/15/2011
Posts: 18354


That's great to hear, Mish. The Early Onset Consultant will be of great benefit to you.

I'm glad that you will meet with her soon.

Reminder:  Chat Sunday evening, if you want to come.

Iris L.

 
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