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SadinHeart
Posted: Thursday, May 10, 2012 12:16 PM
Joined: 12/15/2011
Posts: 403


I find myself participating more often on the other boards. In a way it feels good to be able to help others, sometimes I wonder if people want any comments from us or they want to hear from people that are currently going through it. How do you feel about this?

 

Sometimes it is hard to participate. I find myself more often than not crying while I type and tell a story. Sometimes it becomes so painful that I dont post what I type because I notice myself getting into it too deep.

 

I feel it is important to participate, but I hope it comes a day when I will not participate here anymore. I dont know. I have mixed feelings about it.  


dayn2nite
Posted: Thursday, May 10, 2012 4:32 PM
Joined: 12/18/2011
Posts: 3097


I find myself here a lot also, but wishing I wasn't.  I do feel good helping someone else when I tell an experience I've had, but I don't feel like it's helping me too much right now.

 

I'd like to not feel so stuck like I feel right now.  I have a lot of things I want to do (not fun, more like cleaning, organizing), but every time I think about starting I feel overwhelmed and just sit down or take a nap.

 

I received a card from hospice again today and it had a card from the bereavement coordinator.  I left a message asking for information on a support group or counseling.  I called at the end of the day so I assume I'll receive some response tomorrow.  I feel like until I start really talking about how empty I feel and how tired I feel I'll never start moving forward in this process.


Waiting for a cure
Posted: Thursday, May 10, 2012 4:57 PM
Joined: 12/15/2011
Posts: 295


I peruse the caregiver forum anytime I log in to look at/post to this forum.  I find there are only certain kinds of topics I feel I can read and even fewer i can post to.  Even though we all know/knew what was in store for our loved ones, sometimes it was too hard to think about at the time for me at least....just wanted to get past her current medical issue, behavior, care issue, and take the time I had left with her for what it was worth.  I am assuming I'm not the only one who felt like that.  I don't withhold the fact that my mom already is gone but don't purposefully mention it either. And some days if I can't post without being obvious that my LO is gone already, I'd rather say nothing unless I feel strongly that I have something unique to add that someone else wouldn't necessarily say in the next few posts. 

 

In general, I feel I have less in common with the CGs....not because my mom is gone, but because different people with slightly different problems are posting.  We all have certain things in common, but the differences....c-diff could have been a problem but wasn't, I don't have family drama but was very disappointed in most of her friends....she didn't have a husband and I was the only decision-maker. 

 

I still want to help others and pass on wisdom i have collected here and truly benefitted from, so I still peruse and occasionally post there.  

 

As for this forum, I feel I have a certain connection with you all here.  I expect it is for a season, and eventually we'll "graduate" but I appreciate the good company.

 


dayn2nite
Posted: Thursday, May 10, 2012 5:11 PM
Joined: 12/18/2011
Posts: 3097


Waiting, this forum feels almost "private" to me because I remember when I was actively caregiving I just NEVER NEVER came here because I didn't want to know how it was after.  It wasn't until I knew the end was coming that I dared to come and read here, and I think that's the case with many people.  We don't discover this forum until we need to.
George K
Posted: Thursday, May 10, 2012 6:40 PM
Joined: 12/16/2011
Posts: 2818


SadinHeart, Day2nite, and Waiting for a cure, and anyone else who posts on this board:  My wife is still alive. I don't know for how much longer.  I recently started reading your posts on this forum.  You may not know if you're helping anyone, but you're helping me.  I'm crying as I write this because I just hate where this damned disease is going.  When I had to place her in a nursing home because I couldn't take care of her by myself any longer, the next week I went to Griefshare.  They were a huge help for me in dealing with her loss. They may not understand the exact situation, but they understand pain and loss.   I'm not sure why I'm writing this.  I just want you all to know you're an important source of comfort to me; knowing you're getting through this pain gives me hope I will too.  I guess the important thing is to go through it and not hold on to it.  God besses all of you!
SadinHeart
Posted: Thursday, May 10, 2012 8:17 PM
Joined: 12/15/2011
Posts: 403


GeorgeK.. I am glad that we are able to make a difference in your life. Thank you for sharing that.

 

The bad part of the disease that many dont understand is that our LO's are gone before they are gone. The pain starts way before it begins.

 

Is there life after losing your LO. Yes. Will it be a pain free life. No.

 

I dont believe that time heals all wounds, but I know time will help me deal with it better.

 

How do I get through the loss of my parents in such a short time. I plan ahead. I give myself something to look forward to so I dont look back.


Nikki J
Posted: Thursday, May 10, 2012 8:54 PM
Joined: 12/4/2011
Posts: 91


Hi everyone

I read the other boards a lot but I often feel a little disconnected. I think i felt that way before for a while because there are such different issues in the final stages and even though we went through the driving issue and the moving from home and the out of control finances that was so many years ago it feels like another life. The people who were part of our old stage 7 group are either here on this board or gone.

Sometimes I don't know what to say because I see the writing on the wall for some situations but can see the poster is not ready for what I think would be the right thing to do. I know i had my share of denial in the earlier stages too!

I am not sure when I will be ready to move on. As some of you know my sister was diagnosed with ALS right after my mother died. I have joined an ALS board so am in the position there of a newbie just learning the ropes!

I do think of all of you and of the current caregivers and the brave ALZ people on their boards and keep you all in my prayers.

love

Nicole.


dayn2nite
Posted: Thursday, May 10, 2012 9:21 PM
Joined: 12/18/2011
Posts: 3097


GeorgeK and Nikki, thank you so much for posting.  It does help to know we are all not alone in this.
pattt111
Posted: Friday, May 11, 2012 4:33 AM
Joined: 5/10/2012
Posts: 2


Read your message.  I more or less feel same as you.  Husband in nursing home.  I miss him terribly and spend a lot of time crying.  Have no family to unburden my thoughts with.  Would like to commence conversation with you.  Am  not sure how this program works.
pattt111
Posted: Friday, May 11, 2012 4:38 AM
Joined: 5/10/2012
Posts: 2


Can you tell me what griefshare is?  Husband in nursing home and would like to share with someone in same situation.  Am having hard time and either spend my time crying or sleeping when I am not with him.
SadinHeart
Posted: Friday, May 11, 2012 6:53 AM
Joined: 12/15/2011
Posts: 403


Nikki... ALS stands for Amyotrophic Lateral Sclerosis ?

 

If yes, my paternal grandmother died from that back in 1989.


Nikki J
Posted: Friday, May 11, 2012 11:04 AM
Joined: 12/4/2011
Posts: 91


Yes that is ALS AKA Lou Gehrig's disease in the US, in the UK they call it motor neuron disease.

My maternal aunt had it also and a third sister now has another neurological condition called PSP (progressive supranuclear palsy) and my mother had dementia. They now believe that the same genetic defect is responsible for all of these illnesses which means my cousins and I are at a 50 percent risk and if we are affected our children also have that 50% chance. Do any of your other paternal relatives have any nasty neurological illnesses? I do hope not!

Take care of yourself

love

Nicole


SadinHeart
Posted: Friday, May 11, 2012 11:42 AM
Joined: 12/15/2011
Posts: 403


My grandmother said she was arguing with my grandfather and raised her voice and all of the sudden she felt as if she couldnt speak. We took her to the neuro and he said it was ALS.

 

Within six months she was not able to talk, her body became paralized until she couldnt walk anymore and she became incontinent and not able to swallow. My dad, her only son, made the choice of putting a feeding tube. I think that is why he did a living will for him and mom and asked that no feeding tube be used. She died 20 days later at 11:30pm on Jan 3, 1990.

 

It was six very hard months to watch her go from being okay to dying. It took a toll on my grandfather. They had been married for 62 yrs. He killed himself 1 yr and 3 months after she died. I had taken him to live with me, but no matter what we did, he couldnt live without her. He went to where they lived and hung himself from a tree right outside. It was very hard on me.

 

My father died a yr ago on April 2011 from vascular dementia. The strange thing is that before my grandmother had that incident, she was fine. She didnt have any memory problems and no medical problems at all. She didnt even take medication for anything. Now my dad dies of VD and we dont know anyone else in his family that has ALS or VD.

 

My mom died of AD three months ago, nobody in her family has had AD. So we are not sure what happened. The neurologist said that because my dad didnt start having any problems until he was 79, same for my mom, that we should not worry that more likely it is AD due to advanced age. I am not sure about that, but what else can you do.

 

I know my dad started having memory problems three months after he started taking Lyrica. It's a medication the neurologist prescribed for the numbness he felt in his legs. The only medication my mom took was Actonel. Now I keep hearing things about Fosamax which is a medication like Actonel, causing memory problems in women that have taken it. In addition, now they say that Fosamax which is supposed to be for osteoarthritis is causing severe bone fractures.

 

What a mess. I prefer not to take any medication unless one day I really have to. They fix one thing and mess up another.

 

 

 

 


Nikki J
Posted: Friday, May 11, 2012 12:34 PM
Joined: 12/4/2011
Posts: 91


Oh I am so sorry about your grandparents! How very very tragic!

 

Please do not answer if this is too painful or intrusive but I am curious'

Your grandmother was fine and then suddenly unable to speak at all? And that was the basis of her ALS diagnosis? Did she have scans and an EMG?Was this in the US or elsewhere? Your family is not per chance from Guam? I ask the last question because there was a form of ALS common in families there. other family members had dementia and other neuro illnesses (like my family although we are not from there) The latest theory on that is that it is not genetic but from exposure to a neurotoxin perhaps from eating bats that had eaten a certain type of berries. The incidence in these families has dropped considerably presumably because diets have changed.

 

We certainly did not connect my mom's dementia with her sister's ALS. we thought it was plain old rotten luck and/ or exposure to some toxin when they were children in WWII Europe. My sister's diagnosis couple with my other aunt's PSP blew that out of the water. Certainly Ad is common enough and onset in the older person is felt to be sporadic as you said. And 90 plus% of ALS is sporadic too so your family is probably (hopefully in that category) it is the occurrence of the 2nd ALS case coupled with the other issues that made them decide our issues are genetic!

 

(and sorry to hijack this thread!!!)


SadinHeart
Posted: Friday, May 11, 2012 1:39 PM
Joined: 12/15/2011
Posts: 403


My grandparents are from Spain, but she was here in the US with us. And yes it came on all of the sudden. She said that when she raised her voice to argue with my grandfather that she felt as if something just popped in her head. At first she was very hard to understand and after a few weeks she could not speak at all, only make noises.

 

I am not sure what testing they did, but that is the diagnosis I heard from the neuro one day. I was in my mid 20's and had just had my son so it was very traumatic for me because I adored my grandmother and losing her was very hard. I promised her on her death bed that I would care for my grandfather and then look what happened. So I had a lot of blaming issues in my head for a long time until finally I accepted that everyone does what they want with their lives and I cannot be responsible for anyone's happiness. But I went crazy that year trying to accomodate him and entertain him, but nothing was enough. She was his whole life.

 

I dont know but it seems that neurologist may just be throwing diagnosis out there and not really know one from the other. I am waiting to hear lawyers looking for victims of Lyrica and Fosamax/Actonel one day. I have also heard of cholesterol lowering medications being blamed for memory problems.

 

Dementia has been around for a long time. It used to be called "arteriosclerosis", but now everyone calls it Alzheimer's. To us it is a mystery that both of my parents without having the same genes or any history in their families would develop this disease at the same time. But any doctor that you ask nowadays is clueless.


dayn2nite
Posted: Friday, May 11, 2012 4:34 PM
Joined: 12/18/2011
Posts: 3097


Sad, I think the doctors WANT to be clueless.

 

No neurological diseases in my family either, but my mom had dementia (we still don't know what kind) probably starting in her late 50s and although I didn't have a relationship with my father, his death certificate says he had Parkinson's.

 

My mother took Actonel also, for years.  She also took her statin drugs faithfully for her cholesterol.  Her sister, who is sharp as a tack and 12 years older than her, told us she was put on statins and they made her feel like a zombie.  Go figure.

 

My mother was born here, but my father was born in Italy.  The common environment they had is time in the Boston area and then a great many years in the Detroit area.  No neurological issues with either side of the extended family.


Still Waters
Posted: Friday, May 11, 2012 7:38 PM
Joined: 2/6/2012
Posts: 1092


 

Anyone who is involved with Stage 7 needs your advice in the Caregivers room. So you better not leave. LOL.
 
I feel like I can relate to this group more than most of the people in the Caregivers room now.
 
But I understand why you feel that it might be doing you more harm then good. I feel the same way about coming her so often.
 

George K
Posted: Saturday, May 12, 2012 6:31 AM
Joined: 12/16/2011
Posts: 2818


This is about coming here when it may do you "more harm than good".  I can only speak for myself, but when my niece, mom, my  best friend, two sons all died, while my wife had this damned disease of Alzheimer's through all of it, I had to talk with other people about it.  I've been doing that for more than seven years.  I cry every time I do it.  The thing is I always, 100% of the time, feel better afterwards.  There's a saying: "If our eyes had no tears; our souls would have no rainbows."  I don't talk or think about them constantly, but at least once a week I do.  For my own selfish reasons, I want you all to keep posting.  But if you decide not to, I understand.

 

pattt111, the Griefshare I attended is a Christian Fellowship for people who are struggling with the death of a loved one.  My first night there, about 15 people were present.  Since I was new, they went around the room, each person explaining why they were there.  Two had lost a parent, one a brother, the rest a spouse or significant other.  When it was my turn, I said, "I''m here to grieve the loss of my wife.  The thing is, she's still alive."  Then I went on to explain the woman I married no longer existed in this world.  They talked it over, and decided I could stay.  It was a very healing experience for me; that was over two years ago and I'm still in touch with three of them.  I decided to go for only one twelve-week cycle through their program of recovery because I know some day my wife will pass on to a better life, and I want to go through their program again, probably two or three times more.  I think one of the best ways I can regain some peace is by helping others find theirs. I found it by googling 'griefshare' and finding a local meeting; there were seven in my area and I tried two before I found one I connected with.  For me it was well worth the time I spent with those folks.   Plus, it's free! 

 

 


OMNI461
Posted: Sunday, May 13, 2012 3:21 PM
Joined: 12/20/2011
Posts: 84


I am glad posts here are helping others. I too like to come here to offer encouragement or help as we travel this path, as well as gain support from others going through this or have gone through this. It helps to "talk" about it to others that understand. But I needed to take a break for a few weeks because spending time here was keeping me in the same place it seemed.

 

Also, my dad also has AD and I visit him in the ALF several times a week, and he seems to need to relive my mom's passing every so often, or worse yet, he thinks she is still alive and talks about her being in the apartment with him. So, I am taking many steps forward, and then a few steps back in this process.

 

I still have a need to go to the caregivers board because of my dad, but he has been doing well lately so I have not been searching for ideas there lately. I would rather spend time here with you all to help move along this grief journey.

 

Thanks to all of you who post here....it does help to know I am not alone in some of my feelings and experiences.