When is it over?

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jaysal
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/19/2009 12:14 PM (GMT -7)   
Hi...new member here.
 
It's been about 4 years since my father started losing the threads, began to construct his own world.
And just over the past few months there is only silence after the initial greeting.
 
I hug, stroke and massage his hands and feet, which he seems to enjoy.
 
But now when I make eye contact I feel that it somehow threatens him.
As if he knows he's too far away and can't get back.
 
Has anyone else had this feeling?
 
Jaysal.
 
 
 
 

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 5/20/2009 1:54 PM (GMT -7)   
It happens you just keep loving them stroking or whatever.If he feels threatened when you look him in the eyes don't do it...........
SnowyLynne


jaysal
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/20/2009 4:02 PM (GMT -7)   
Thanks SnowyLynne
 
It's maybe me,  projecting my own emotions and fears onto him.
 
I visit him every second day, to assist with his meals and put on his pyjamas etc, which is great practical help I know, but always inside and behind it all is this desparation to hang on to him.
 
He was my world.
 
 

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23416
   Posted 5/21/2009 5:37 AM (GMT -7)   
It is always so hard to see someone we love decline in mental health. Even though he may not be able to express himself, I bet he is relieved to know you are there with him. It's the little things that mean so much.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
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jaysal
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/21/2009 6:07 AM (GMT -7)   
Thanks Red.
 
Hoping always that it does bring some comfort by being there.
But also wishing he isn't aware of the need for comfort so that he isn't stressed at all.
 
Want it both ways I know.... hate this insidious disease.
 

lynnie771
Regular Member


Date Joined Oct 2008
Total Posts : 53
   Posted 5/21/2009 9:54 AM (GMT -7)   
hi jaysal....
i'm not sure if it's my place to welcome you in around here, but welcome......
 
i'm going through basically the same thing with my partner right now, she seems further away everyday.....we've been together 20 years...
 
jaysal, i think you described something that i couldn't.....she seems to want to get aggressive and skidish of me when i look directly into her eyes for a response....i had not been able to link the 2 until i saw your post, so thank you very much....
i hope i will be able to help you if i can in any way
lynnie

jaysal
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/21/2009 3:49 PM (GMT -7)   

Hi Lynnie,

thanks for the welcome.

I think there's a difference when it's your partner, I've seen my mother do the same thing but with more intensity, I imagine the need to connect with a partner is stronger.

My "gut" feeling is that we are inadvertently asking them of something they aren't able to give and it threatens them and they get frustrated.

What I do now is only use eye contact briefly.

I guess it wasn't so bad when each day he got further away but I was able to go with him ( if that makes any sense).... now there's no place to follow.

It's a minefield of emotion isn't it?

You have just helped me!....reading this back to myself I got very anxious....and realise that with my brain pathways still working normally, the inability to connect is frightening, and it makes me feel inadequate.... how must it feel for someone who's pathways are becoming further apart  every day?

 

 

 

 


MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 5/23/2009 6:40 AM (GMT -7)   
It is called "the long good-bye" SO aptly worded. My mom was diagnosed over five years ago and continues to decline mentally. The doctor says she's doing well. Yes physically. Mentally? She doesn't know who I am when I go to visit her. During the course of the day, she will remember. Seems that voices can trigger some memories. There are times I don't know who this person is. Her personality has changed so much. She has become so childlike.

My best resource has been the book called "The 36 Hour Day". You can purchase it on line or in book store and it is very inexpensive.

Then again, I've read and read for the past five years and it still doesn't prepare me for what she is becoming, or who she is losing.

I wish all of you well,
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


jaysal
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/24/2009 6:11 AM (GMT -7)   

Dear Miriam

I have loved and adored my father for 60 years, and it's only now that I can truly love him unconditionally as he did me as a child.

He doesn't know "who" I am, but he knows I am different to the people who surround him...I wear the same perfume, use the same phrases and mannerisms, in the hope it will give him some reassurance and sense of familiarity. But all of this is guesswork, I can't know what his world looks like to him, and I suspect the reassurance is for me.

It is as you say the "long" goodbye and sometimes the grief will ambush me when I am feeling vulnerable...but I am so grateful now that I can say goodbye, he's not been snatched away, he isn't in pain and he isn't concerned with the stress and anxiety of daily life.

Most of what distresses me is my need to explain to him what's happening, to ask if he is okay, to let him know he will never be alone, always be cared for. And I recognise it's my needs not being fulfilled that hurts so much.

He most certainly isn't the man I knew, but with the barriers down, the reserve gone, his essence is something exquisite. And finally I can love him in a way I never dreamt was possible.

But I still want him back!

 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23416
   Posted 5/26/2009 5:22 AM (GMT -7)   
I understand your grief. I too grieve for the woman who was. My grandmother (and grandfather) was always a big part of my life. My mother (her daughter) died when I was 10 and she was always there for me. She did not live in the same state as me but she was but a phone call away. Then when I got older, we would go visit her and gpa. After gpa died, she moved in with us and lived with us for 4 almost 5 years. I was her primary caregiver after her mind started going. I seen the woman I love decline rapidly both physically and mentally. She is in an assisted living home now and I still go see her twice a week. But everytime I go, I don't know what I am in for. She has never forgot who I am and she clings to me like a frightened child. It tears me up inside when I leave her. Somedays she will call me up and babble nonsense and it's usually fear filled. I am usually able to calm her down but it still is hard on me. I absolutely HATE this disease! But what I found that comforts me is remembering the way she was and I feel extremely grateful to have known her before her mental decline. I look back on those memories with fondness. Hang in there, we all know what it's like to see the one we love diminish.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jaysal
New Member


Date Joined May 2009
Total Posts : 6
   Posted 5/26/2009 7:05 PM (GMT -7)   

Red

My father went through this stage of being the frightened child and like you it was gut wrenching to leave him. So much guilt and hopeless despair in not being able to help them. When I look back this was the hardest time of all.

Like a mantra I kept repeating to myself soon, soon this stage will be over and thankfully now it is and he's in a place where nothing seems to bother him.

But there are other people where he lives, whom I have known for a few years now and they seem to be locked into this frightened child stage, so confused and troubled. I used to go every day but now every second day so I have spent quite some time with the other people there, and from what I have observed they do forget the distress quite quickly.

Everyone is so different though, as are the effects of this disease....all that is common is how much it hurts the families. I think of it as a trade off, how much it hurts is equal to how loved and wonderful they were.

What I find very touching though is the extreme patience and gentleness they show to one another, even though seemingly they aren't communicating any sense as we know it. And I wish we could be as generous with our time and care as these new personalities are.

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