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So out of sorts I want to scream, cry, sleep.
Stellar Daughter-In-Law
Posted: Wednesday, May 30, 2012 2:40 AM
Joined: 12/21/2011
Posts: 282


My FIL died almost two weeks ago.  I haven't been able to even think outside my head and our small world of grieving enough to think about getting support.  But I had a little panic attack tonight and called the 800 number.  It helped distract me, but I kind of felt like the counselor was just reading a boilerplate manual on the stages of grief.  Whatever.

 

I feel callous right now.  Cold. Distant.  I want to feel more of my feelings, but the wall just slams down.  My mind cannot compute that he is no longer here. It just does not seem possible. 

 

On one hand I am very relieved.  For  him, for me, for my husband.  This disease sucks and I am glad he did not have to endure it any longer.  I hate Alzheimer's with such a passion that I almost don't even want to be on this board seeing the purple and the logo.  I just want to be done with this f'ed up disease.  And I guess I am.  But the poison of it all lingers.  While my FIL was alive, I don't think I had any time to be angry at this disease and how it impacted our lives.  It is all just hitting me right now and I want to throw my laptop at the wall. 

 

I hate that it took my FIL's mind while he was alive.  I hate that when I met my husband, his dad already had the beginning of Alz. I hate that I never knew my FIL without this disease.  I want a different set of memories of him.  Don't get me wrong, I cherish all of my time spent with him.  It was deep and meaningful and extremely loving and caring.  But we are having a memorial service on Friday for him.  It will be in a home, and since none of us are religious, we are just going to sit around and tell stories about my FIL.  It will be great to hear stories from relatives about when he was a kid and a younger adult.  But I hate that the only stories I have to tell are stories of him with this disease.  My memories of him are so special, but in a very private way.  They aren't the things you really share with others.  Maybe a few of them.  But the meaningful memories are so intimate and private about caregiving moments.  I hate that everyone else in his life got to know him before he had this disease and that this disease is what I had of him.  Again, there was a lot of love.  I just feel ripped off that he is gone and I don't have many carefree times to reflect on. 

 

I think the weight of caregiving is hitting me like a ton of bricks.  No time to process it while he was alive. 


KML
Posted: Wednesday, May 30, 2012 12:54 PM
Joined: 11/30/2011
Posts: 2105


Stellar:

 

I'm sorry, I didn't know your father-in-law had passed away, I know he was under hospice care.  I am sorry for your and your husband's loss.

 

My dad passed away last week and I can relate to what you are feeling.

 

I took this path with my mom 12 years ago, but it doesn't make my dad's death any easier.  I'm still the same person, and the thoughts that keep floating up are the same.

 

We're grieving, sometimes it's quiet, but that's not me, I'm the screaming, crying, angry type, wish I could sleep, so does everyone else around me.  I haven't had much time for thinking and quiet reflection but I sure do hope I can soon because I'm driving myself nuts with my thoughts and doubts and so on.

 

I guess, for us, though, it's another journey, so be patient with yourself and be kind to yourself.

 

I had forgotten who my dad was before this disease and I've known him all my life.  The disease has a way of becoming all consuming.  I posted on the caregiver side that the other day I was looking at old pictures of him, and I found myself remembering he was more than this disease made of him.  I guess I'm ashamed to admit that I had sort of pushed the pre-dad aside and concentrated on the dad who had Alzheimer's.

 

I think it will be good for you to hear the stories from others.  But you know what?  You had him during the most difficult time in his life, and you treated him with such care and love, it takes a very special human being to do that.  He was one fortunate man to have you as a daughter-in-law.  I wish you peace, and me, too.


cowboys
Posted: Wednesday, May 30, 2012 2:40 PM
Joined: 12/10/2011
Posts: 338


I am so truly sorry stellar. I am in fresh, raw grief myself and feel alot of those feelings you are having. I am in bereavement counseling with Hospice. I miss my dad so much sometimes my heart literally hurts. I can't stand it!


I understand what you are saying about not knowing your FIL before this disease. I did know my dad before but will I ever get those memories back in my head?? All I remember now is him with the disease.


You will have special moments you can share at the memorial. You don't have to say alot. You spent alot of time with him, you probably have more moments of joy than you realize.


My condolences to your DH also. You have both been amazing caregivers and family to your FIL. Rest if you can, nothing really helps me right now. I wish I were more consoled by the fact that dad is no longer suffering, I am selfish and I miss him. 


I didn't come here for awhile either, didn't want to ever see this board or here about this stinkin disease but here I am, I need help. You do too friend.


I know you arent' religious but I will be praying for you anyway.


dayn2nite
Posted: Wednesday, May 30, 2012 5:27 PM
Joined: 12/18/2011
Posts: 3097


Stellar, I'm glad you came here to talk.  I know it has to be hell for you, you took very good care of FIL during his journey.  I'm also sorry you didn't know him prior to dementia.

 

One positive is that the man you did know was truly "him".  Dementia strips away all the stuff we hide behind in our lives.  When you know someone with dementia, you know the unvarnished version of that person. 

 

The length of time, the loss we witness and even the grief for this disease are things people don't understand unless they have also been through it. 

 

I think around 1-2 weeks is when the initial shock wears off.  I also feel panic-type symptoms at times (never had anxiety before) and my doctor suggested some face-to-face support (which I am already seeking out). 

 

There are some days I wish I could just go outside and scream until I collapse.  I may do that one day--drive somewhere rural and do it.  I'll let you know if I feel better.

 

All in all, the grief absolutely SUCKS and we are here for you.  I have your DH in my thoughts. 

 

Is your dog showing any symptoms of grief?  I know he spent a lot of time with your FIL too.  Did you still have the caregivers who moved with you?  If so, how are they?


SadinHeart
Posted: Wednesday, May 30, 2012 5:58 PM
Joined: 12/15/2011
Posts: 403


Those first days and weeks are horrible. Imagine I lost my dad to AD and then had to deal with mom's fast decline while I was still mourning my dad.

 

I would go in the shower and cry. Sometimes I realized I was being loud, but I guess the sound of the shower silenced it because my husband never heard me. It felt good to have the water running on my face while crying. Most of the time I was leaning on the wall just letting it all out.

 

Even though my parents only dealt with this disease for two years, that we could notice changes, those last memories stay with you for quite a while. I am still trying to peel off the memories of my dad and mom at the end.

 

All I can tell you is to take it one day at a time, not much we can do. Eventually the old memories will replace the recent memories and even though you may not have known him before AD, you knew him well.

 

Like VP Biden said the other day when he talked about losing his wife and daughter in a car accident: "There will come a day, I promise you and your parents, as well, when the thought of your son or daughter or your husband or wife brings a smile to your lips before it brings a tear to your eye. It will happen," Biden said.

 


cowboys
Posted: Wednesday, May 30, 2012 6:36 PM
Joined: 12/10/2011
Posts: 338


Oh wow Sadinheart, thanks so much for those words of VP Biden's, those are the most comforting words I have heard yet. I am going to focus on that. Thank you!
Waiting for a cure
Posted: Wednesday, May 30, 2012 6:48 PM
Joined: 12/15/2011
Posts: 295


Stellar, KML, I'm sorry for your recent, tragic losses.  I too am glad you're here on this board getting support from people who truly understand the journey, the pain, the anger, the loss. 

 

Stellar, I don't think you should rush to feel the feelings, they'll come, most definitely.  OMNI and Beth told me that the numbness is a kind of protection for the first few weeks after our loved ones pass away.  I agree.  I've been without my mom for four months today.  The numbness has certainly long gone and the pain is very present to deal with.  I think I've been handling a handful of sorrows at a time.  First, I just grieved what happened to her, and to me (losing my mom little by little and eventually, witnessing her death over 5 days).  I've either processed that somewhat or put it away for later, because now I'm mostly grieving missing the mom who was healthy, vibrant, wonderful.  She was 65 when she died, and until this awful disease, she had lots of energy and at least moderately good health.

 

Please be patient and gentle with yourself, don't take on too much and don't listen to the world that might eventually urge you to hurry up and get back to life as usual.


SadinHeart
Posted: Wednesday, May 30, 2012 7:18 PM
Joined: 12/15/2011
Posts: 403


I lost my mom 3.5 months ago and I lost my dad 13 months ago.

 

I hope there will come a day when we stop counting.


Still Waters
Posted: Thursday, May 31, 2012 4:37 AM
Joined: 2/6/2012
Posts: 1092


You girls are really amazing. Your in good hands here Stellar.
Stellar Daughter-In-Law
Posted: Tuesday, June 5, 2012 3:20 PM
Joined: 12/21/2011
Posts: 282


It has been almost a week since I have been on here.  The need to be here is so different now than when he was alive.  It waxes and wains. Just like you said Cowboy.  Most of the time I now want to have nothing to do with the word Alzheimers, nor do I want to see there purple borders and the logo for the Alz Association or anything.  It reminds me too much of caregiving and I am so alternately happy to be done with that and miss it tremendously too.  (Another post on that topic soon to come.)

 

I wanted to share with you guys about what happened at his memorial.  This is long and perhaps full of too many details, but it was a pretty great event for everyone there, and especially meaningful for me.

 

 There were two parts; the morning part at the grave side with only 8 family members, and then a big celebration of his life in the evening with probably 60 people - our friends, my FIL's family, my own family (my own uncle, brother, sister-in-law, parents, and cousins came from out of town for my FIL's memorial - god did I feel supported!) Plus, all of our close caregivers were there.  One even flew from New Jersey to Chicago!

 

A wonderful surprise was the social worker and the art therapist from my FIL's day program who were there.  He quit going over a year ago and they still showed up!  The art therapist surprised me with a gift - it was the last piece of art work my FIL ever made and she had kept it.  It was a clay piece that looked a hell of a lot like a chocolate fudge brownie but she said my FIL told her "It is a brick that is supposed to be strong enough to stand on its own."  It just melted my heart.

 

These two women, the social worker and the art therapist, sat with me on the couch and really talked to me about how I am doing.  They were shocked that my FIL had so much family present.  They said, "I thought you and your husband were the only ones."  I said, "We were!  Except for his brother, none of these people came to visit him while he was alive. They didn't call, write, or care for him at all.  One cousin lived down the street five minutes and visited him 2 times in four years."  I got so angry at all of my husband's family members around me.  My own family was far more attentive to my FIL than his family.  It felt really good to talk about this with these great woman and feel all that anger in the midst of this celebration and then be able to look around the room and see the caregivers, my husband, our friends who have been incredibly supportive, and think, my god, that is what family really is! It really helped me care less about what any of these people thought about me or my time with my FIL.  I think I knew him better than they did, certainly in the end of his life.

 

My husband's family is very, very blue blood, old school, wealthy.  When it came times to tell stories they were reflecting on memories of my FIL as a young man at the yacht club.  They were talking about their boats.  And memories of him at the country club.  They were talking about what their favorite memories were of him as a kid growing up - was it him in their billiards room or him in their home library?  It was hard not to roll my eyes.  I know everybody comes from a different lot in life, but it is just weird for me to have all that money talk thrown around.

 

Then my DH's uncle, who I am really digging, suddenly turned the floor over to one of our caregivers.  He met this guy once or twice and just really respected the relationship he saw between this caregiver and my FIL.  The poor caregiver has major social anxiety and had taken a bunch of xanax before come and also tossed back a couple of drinks.  Then he was put on the spot and he just let lose.  He is a very expressive gay man who is a performing artists, totally melodramatic, and an all around incredible human being.  He was wearing a hot pink shirt, grey suit, and metallic silver dress shoes.  He also was wearing on his lapel a pin of a dove with beads and the words love hanging down from it.  The pin had belonged to my FIL. He was a sight to behold and just let the words flow.  He talked about what it is like to use non-verbal communication with people with dementia, and how that helped him understand what my FIL was like.  He completely talked about his inabilities and physical and mental challenges.  It was completely respectful, raw, and honest and opened the doorway for me to be the same.

 

After the caregiver spoke, an extremely drunk 40-something nephew started talking/weeping loudly, telling the room about how he used to go sailing with my FIL at the very end of the day and how the last two hours before sunset were the best two hours of the day.

 

I spoke next and used that metaphor.  I said I agreed that the last two hours of sunset are the best of the day, and that is the equivalent of the time I spent with my FIL.  I knew him in the sunset of his life and in many ways I think they  were some of the best years of his life because he lived so large and was so happy.  I talked about the incredible ladies in his life, two special women he dated - one in independent living and one in his assisted living facility and how he is such a sensitive guy and loved helping these women and taking care of them even though he himself was in such need.   I talked about what great years they were because in his disease he had so much freedom and permission from us as a family to be goofey and confused and whatever he needed to be whenever.  When I was done talking my husband thanked me for being the best DIL in the world and the whole rooms started clapping.  I gotta say, it felt really, really good. 

 

I am still hardly feeling his loss.  I know his death happened and I know he is not coming back.  It is rare that I can actually feel it.  In the short moments I do, it feels much like what Cowboys said.  I feel like my heart has been ripped out and the veins in my arms along with it.  I am just letting what happens happen.

 

To anyone who is still reading, thanks.  And to Still Waters, if you are here, I miss you and appreciate your commenting here.

 

 

 

 

 

 


dayn2nite
Posted: Tuesday, June 5, 2012 3:59 PM
Joined: 12/18/2011
Posts: 3097


Stellar Daughter-In-Law wrote:

The art therapist surprised me with a gift - it was the last piece of art work my FIL ever made and she had kept it.  It was a clay piece that looked a hell of a lot like a chocolate fudge brownie but she said my FIL told her "It is a brick that is supposed to be strong enough to stand on its own."  It just melted my heart. 

 

 

 

 


I can't even put into words what a beautiful gesture that is and how your FIL communicated what he was feeling through his art.  I'm just sitting here in a puddle.  Thank you for giving us an update.
cowboys
Posted: Tuesday, June 5, 2012 5:52 PM
Joined: 12/10/2011
Posts: 338


Stellar, I honestly cannot thank you enough for sharing this experience with us. I just have such a picture in my mind of that day, you described it so well. Thank you.

 

I must admit I did laugh out loud when reading the part about the gay caregiver. omg..especially his attire. One of my best friends is just like this..so flamboyant and I love it.

 

What you said at the memorial was beautiful but what you did for your FIL was stellar! We did not have this type of service for my dad, his family is gone and has been for awhile. We simply celebrated his life with the wonderful caregivers who cared for him so completely for 3 years. Some became like family to us and they wanted to be part of his goodbye. We always remember them. When I get the strength I will go to the care home to see 'my girls' but I am no where near ready to walk in there..I may never be but I do miss them alot.

 

One day at a time...get some rest and again thank you.


Still Waters
Posted: Tuesday, June 5, 2012 8:40 PM
Joined: 2/6/2012
Posts: 1092


Glad to see your in better spirits. It's inspirational.