We grieve over great loss. We use the word around death. It's the powerful feelings we have when we lose someone of great value. The word means what we go through trying to come to terms with that.
In AD we go through many losses of great value but we do not generally apply formal grieving to them. There is no social custom for this we engage in. The old go through this too without AD in the loss of abilities.
It's serious in AD because the big losses keep coming simultaneously with us continuing to have more and more demanded from us creating a state where the natural and necessary need to hope and the emotional turmoil within are pounded time and again with specifics of serious loss.
I'll pick just one from a long list. Respect. Numerous should be discussed because they also combine. But.
We understood what respect is before. We don't now. Genuine respect for our spouse and their rights and opinions. Respect for our own right to be what we are. Respect for the roles and obligations. Respect for our relationships with others. Respect for our place in the community. Always the previous genuine respect all of which we understood (we KNEW) differently before.
Stop. Those aren't words. They were the bedrocks of what we were and knew. It's just one single aspect but that alone is sufficient if we truly realize all those important fundamentals of what we were have been transformed beyond recognition or destroyed.
Every person here has experienced moments of disgust. We are human. Anger, despair, irritation, exhaustion. There are five words not just attacking respect - but hacking it to death repeatedly to the point of absurdity. Or more relevant - to the point of clinical insanity. There's nothing sane about this.
When a spouse suddenly dies all the cornerstones of our lives were in tact. All our sense of what reality is and who we are and what normal is are in tact. We start grieving from a position of strength.
When a close person loses a spouse suddenly or after an illness, we understand how very important it is that they go through a grieving process and how powerful that is.
AD almost destroys that understanding. It does that by keeping the spouse under constant serious strain, constant renewal of hope and commitment to keep fighting, constant distortion of all previously normal values in our life, and constant pieces of that same loss the other spouse experienced all at once.
By the time our spouse actually passes every sense of reality which we lived our lives by has been shredded; but, done so slowly and always keeping us in the sense of digging deeper to do more battle - there is very little that was real or an aspect of life unrelated to fighting this disease left for us to use to deal with that.
Instead in the end we are left with what is actually a horror seeming normal. That while we don't want them to go - we do. Such is the magnitude of damage to our psyche and all would do well to take a moment to take in that it actually is serious damage.
It is a superman or superwoman who can come through this and not be seriously damaged. It would be a feat to just start grieving normally when they pass. Some do. The majority of us can't because we begin our grieving of their passing from a position of such exhaustion mentally, such a physical training of keeping on fighting (like a rat on a wheel that can't stop running), and such an obliteration of all that was normal - that the time that is normally when people grieve is mostly now an empty strangeness (like a marathon runner who is exhausted but whose muscle memory keeps trying to keep going even after crossing the tape).
When the quiet settles in so does the fact that we have no or little equipment left to start dealing with normal life because every last aspect of our life has been transformed in ways that have nothing to do with us (with our own well being).
Just the event of not having to look after them after so long on top of the fact that we are now left with looking at ourselves for the first time in years are two shocks that the normal person never faces close to such an extent. We often literally do not know ourselves anymore and have transformed in any event.
For each of us our methods of coping and our psychologies are so different there is no one answer. Society has not conceptualized a working process we believe in; such as we believe in and accept that people go through a grieving period when their spouse passes under normal cirumstances. There is no AD grieving process.
If we learned that our friend can no longer drive because of vision or age - we would feel sorry for them just because of that one clearly recognizable loss. That was normal and we would have felt that.
But did we feel that exact normal feeling when that happened/will happen to our spouse? No. We had to keep fighting. We had to be practical. We had to be strong. No we couldn't afford normal.
That's just losing driving.
It's no wonder that spouses are lost when the other spouse finally passes because of AD.
There are some answers I think or at least partial ones. I believe these thoughts about grieving to be true and also that it's important to understand more about how AD impacts our lives beyond the apparent. Others may not agree or have different thoughts and I welcome them to comment.
Wolf, it was interesting reading your comments immediately after I got home from a session with my psychologist where we discussed exactly what you were writing about. The site director at the adult day center my wife attends calls it "Grief on the Installment Plan". She is planning a support session based on that theme.
AD loss is very slow and it is give an take from day to day. I see the loss of speech comming, the loss of words now, but I can play a guessing game to figure out the word. I know that it will happen and you try to be prepared, but this is so gradual it has been going on for years. The loss is back and forth.
When his 2nd Heart Attack took him, it was unexpected. Even his Cardiologist was shocked. My Dad was 50 when we lost him. Mom was 44 and still had a High Scooler, a Junior High Schooler, and two elementary schoolers at home, and one in College. Two of us were on our own. The biggest difference in dealing with his loss, compared to what I’m dealing with now as I lose DH to VAD, is that when Dad died we all had our normal daily lives to deal with while we grieved. That Gave us the grounding to get us through. I have been Caregiving DH a very long time, first with Mental Illness, and then VaD. At the beginning it was easy to get buried in the day to day care and let the individual everyday contacts I’d had go. Not smart on my part. Normal everyday living is the core of our lives. We build our relationships on and in it. By allowing Alz(or whichever Dementia you’re dealing with) to destroy that, when your LO passes, you’ll be left mentally distraught, physically exhausted, and with nothing to reach for—no goal,no future, nothing to connect to, no one to connect with. This is why, I made the Resolution I did, last January, and why I’m trying to carry it out for myself as well. It is imparitive that Caregivers get help in early; that They find a way to have respite—as much as they can as often as possible. They (we) have to maintain what existing “normal life”contacts we can and outreach to make new ones. If we are to succeed in getting our LOs through this with dignity and love, and survive it ourselves, we have to have at least some “normal daily living” connections to reach for and stand on. It isn’t easy,. Nobody ever promised easy. Anything worthwhile comes dear. If getting our Los through is a worthy goal, then surely surviving and creating an AFTER for ourselves is equally important. Short and sharp or long and wearing, the grief of losing an LO will be better bourn by the surviving Spouse who has harbored the strengths of their own lives as a foundation for building a new future.
Wolf--the "special" type of grief associated with losing a LO to dementia is why I believe in support groups. A good support group is essentially grief counseling, tailored to the ongoing losses we face that require years of endurance.
Wolf...you said it well....our grief as caregivers for our AD spouses is unlike any other. Yes with each phase of AD and it's new loss of abilities, comes another process of grieving we must try to go through....only we don't have the time because we are still taking care of our spouses and doing "a little more" for them to compensate for this new loss. It is truly unique and such an up and down process for us.
This is a subject near and dear to my heart. It is something I have been struggling with (as we all have) for years. The part I find oh so difficult is the UNRESOLVED aspect of our grieving. I understand the nature of grief and grieving. I understand that there are stages we all go through, and back through again.
What Wolf so eloquently points out, is that other losses people have are tragic, painful, even final, in the case of a lost loved one. In no way do I mean to belittle or negate the losses outside of this dementia world. They are real and horribly difficult. But there is an end or an acceptance at some point. But how many, outside of the dementia caregiver, is dealing with unresolved grief along with the exhaustion etc etc?
We grieve the DX, then each small loss we start again, then we grieve our marriage, then we start again as another loss of skill and another stage hits. Over and over for years. Maybe we hit acceptance at a certain point..and another loss comes and slams you in the face like a shovel upside the head. It starts again..the grieving, the sorrow. Again, we learn to find acceptance. Bam...incontinence..grief...sorrow....wham...can't find his bedroom..grief..sorrow...over and over and over.
I am in therapy with a great therapist/also phsyichiatrist (sp?) for medication. I feel so drained and tired from this unresolved unrelenting grieving. Sometimes I can barely face another day, and my DH is in a NH now, so I am not even doing the "heavy lifting". Just my 2 cents on grief.
I was thinking about this today..my brother's wife is in last stage non small cell adnocarcinoma of the lung. She is now at the point where she coughs all the time and can hardly talk for being so breathless. She has part of a lung that is collapsed and there is the threat that the lower part of the lung is about to face the same thing and so far the doctors do not know what the reason is as it appears not to be any of the normal sorts of things that could cause this. My brother said they have PET for tomorrow and maybe more radiation..but how much can a person have. It was a year in Feb that she was DX with this. My brother said that there is no joy in the birth of the first grandson ( 2 weeks ago today) because of all of this which is unbearable. I was trying to contrast his emotional roller coaster to what we are facing...I guess in his situation for a time there was the hope of improvement or at the very least, some measure of stability..for us we know there is no hope..just palliative. He sees her decline very quickly while we see our LO decline inch by inch and each new revelation is a slap in the face..So for me, right now I can't relate at all..I mean I feel really badly for him and I can't imagine how he is hurting and yet we are in for such a long haul and ours is so different..yet these terminal diseases leave all of us a wreck in a heap for a time..Are we better off because we have a longer haul and have time to " get used" to the loss compared to someone who has had this kind of disease that has the clock literally ticking?
Mimi..I am so sorry for your brother and your family. I feel a bit of a heel, but in no way do I mean to diminish anothers sorrow. I remember well my mothers horrid journey with cancer and how painful it was to lose her and how long it took to get over it. Dementia I guess, is just a different animal..but still an animal. Horse vs Zebra.
When my mother was ill over 20 years ago, cancer, I had a good friend who lost her father to suicide. My mother struggled for 18 months. We lost our parents with in about two months of each other. She asked me if I thought it was worse to lose a parent my way or her way. I told her that I thought her way was worse as you didn't have time to say goodbye. She agreed.
This is thread is difficult for me too. I have been grieving my DH for 7 years and he's still here. I grieved my Mother for 4 years before she passed away last Oct. at age 92. I hadn't seen her in those 4 years -couldn't travel with DH. My son was brutally murdered on Christmas Day, 2010. There is much I still don't know about that and there will be no beginning of "closure" - if there is such a thing - and I doubt it, until the trial which won't be for at least 2-3 years. To lose so much in so little time is devastating. But again, it was a parent and child - not my husband - yet.
The only way I get through this is to keep busy, put one foot in front of the other, do what has to be done for DH - and keep living, as best I can.
Dear Vickie, so much to deal with, so much grieving.
A former employee (dh's right hand man, a very bright young fellow) came to see us on Friday, and brought his small children. (Dh loves to watch children, and the kids love to play in our huge yard, very un-Dutch). He had not seen dh for six months, so in preparation I sent him an email explaining that there was very little left of Siem. As he was leaving, B turned to me and said quietly that what I had said in the email was a perfect description. There's just nothing left of him.
oh, hugs, my dear friends... I'm looking at leaving my dh at a nursing home tomorrow while I take a few days respite. He doesn't know he's going yet; it will only be for five days, a trial run... I'm dreading it.
briegull, I didn't even know that you could do that for a few days. That might be a good way to let people know how bad our LO's are actually doing if they haven't seen for themselves yet.
I saw some changes too this past week when two of the girls and one granddaughter were here. It was not earth shattering but an omen that things are changing slowly. Things were fine and his birthday was a huge success with lots of calls and cards and a dinner out and one dental visit to get his new tooth implant..But the next day we all noticed how he was on the grumpy and bossy side with everyone and a little confused about things overall. Then yesterday, I forgot to give him his morning medicines....he was pretty much his normal AD self all day but then we took our daughter out for her birthday dinner and while there he became chatty with the man next to us at another table..the guy had a huge salad none of us had ever seen such a thing...the man was ok about his chatting with him about the salad but the wife( or whatever she was) started to get a little annoyed..and after a few interruptions of their dinner he got a carryout box. I don't know if it was just too much food or too much DH but they left. Then when the bill came he was all over that and causing me to make mistakes with his ordering what to do and what to leave etc..we had a gift card and the bal due was not even 5 bucks but I was trying to figure the tip in...then I walked out with the merchant copy... Then this morning I woke up sick with well I was trotting around a lot...and we had to get the daughter to the airport. He can't drive...he was trying to be helpful and would not let up on this and was only trying to help...he finally said " all I want to do is help you and you won't let me" which a lot of time is true due to his condition and what he physiclly cannot do but thinks he can...so it was tense. I hate these changes that mean things are slowly going more and more wrong.
Then to top it off, I had put a turkey breast in the slow cooker this morning for our dinner. Went to check on it about 3:30 - guess what?? SOMEONE had unplugged it~! I know it wasn't me and he surely did not remember doing it. So, I blamed it on Millie - and we'll have turkey breast tomorrow. LOL
Ooops, posted under the wrong thread. You can tell it's been a bad day! Don't know how to delete it.
My husband has been diagnosed with AD since February 2007, though I knew he had it in 2006, it just took a year for me to convince his doctor. He has been on Hospice since July 2009. He is unable to talk, sit up, etc. He has been bedridden since August 2010. He has been unable to stand even with assistance since January 2011. He can only lay in the bed and open his mouth for food or the straw (for liquid). These last two weeks he has been moaning in his sleep (though not awake) a lot of the time. I have grieved over the loss of my husband these four and a half years, and grieve over the fact that he is fading before my eyes every day. I lost my daughter tragically and overnight in June 2009, and I mourned her loss on several levels: my first born child; my closest buddy; my co-caregiver of my husband (she lived with us these last few years). I find my crying hits me off and on and when I least expect it. I can't cope with her loss.
Then, in January 2011, my best friend from childhood that I took weekend trips to Branson with twice a year, and had lunch with on Saturdays died of a sudden heart attack!!! I'm trying to be there for her three adult children while I mourn her loss as well!!!
My two sons and other daughter live out of state, so now I'm by myself, to take care of my husband and myself. And still grieving for my three loves....and I know that there will be a different kind of grief and mourning when my husband passes on...which they say is only months from now, or could happen overnight.... I wouldn't wish AD on my worse enemy. And I think the slow death is much, much worse......
Oh Mary, my heart goes out to you. This is the time to get whatever respite care you can possibly manage. A breath of spring and even a few hours to yourself will help to give you strength. We are thinking of you.
Thank you all for your wonderful comments and support. They mean the world to me! I love all of you! You are my family!
My respite care was wonderful....it allowed me time to clean up after the bad storms and tornadoes hit our town! I lost a tree and a portion of my fence, but it missed the house, thank goodness! Getting trees removed is costly!
Do you all see that black cloud that seems to have taken residence above my head these last couple of years???? <grin>
mary indeed you have weathered your fair share and more of heartache during these times. i hope you get some relief with all the stress you have lately and some me time to recoup mentally. divvi