How do you honor your grief while the person is still alive?

I don't want to say "sorry" prematurely. I think perhaps you should try to enjoy your changed life with him, else it passes you by. In no way, do I mean to imply uncaring words. Please know that. I do sympathize with you, as no one dynamic in any illness is going to remain static. Dear God - please lift this lady up in prayer. Amen.

I hold my husbands hand or feed him sweets like milk shakes and cookies. This is the most difficult time dealing with end of life. Take care of yourself. And its ok to cry. Just try to do things that bring you a little joy, cuz you r living ur life still, even tho its a huge struggle

You need Grievance meetings to be with people going through what you are going through right now. You need to Prepare for even "The Inevitable" And with this Group, God as well, It might help in this time of Need.
I am so sorry, love. Next Friday, I Bury a Mom who had Cancer...I sympathize with you.

This may sound heartless at first, but give this thought some time, it may give a positive perspective. My father was a blue collar philosopher, thoughts created only from personal experience and keen observation. He believed and taught me to believe that grief is a selfish emotion. We feel bad for our loss of a loved one. The loss of time to spend with them, cut short. In your case there are still moments to enjoy and share. Some of grief is regret. Regret that we didn't make more time to spend with them when they were still vibrant and able. Again, a selfish emotion. I have come close to dying several times. My experience was that time almost stopped, or at least slowed to an almost timeless perception. If your loved one is aware of their short days left, I suspect that their perception of time is similar. Moments are much longer than in everyday life. Introspective moments might be timeless. I suggest that we all experience the remaining moments with loved ones nearing their end of physical life from their perspective. I think you will find that those moments will be completely filled with powerful energy from the spectrum of emotions. Just as a fulfilling life should be lived. I think the phrase "die, before you die" is repeated by many great teachers. Its all part of life.

With my mom I called it 'pre-grieving' as each reverse milestone came up - as a child reaches a milestone you rejoice but here it is as each ability is lost you grieve that loss .... YOU ARE NOT ALONE here are many who have done this before you & many that will do so after you

Get some help as what you discribe is YOUR depression from the circumstances you are living through - good luck

If you have time to read, you might want to get the book "Ambiguous Loss" by Pauline Boss.

My husband is in stage 4 Progressive Supra Nuclear Palsy (neurological disease), has dementia associated with the PSP and is clinically blind.

Like you, I am grieving his (and our situation), but then will obviously grieve the final loss too.

Best to you.

Dear JuliaRose
Your question is profound and one that others are dealing with every day. I agree that what helps is personal and depends on the individual. That being said, here are my thoughts.

It is important to feel and express your sadness. Honoring your grief is not running away from it or denying it.  Try to be patient with the ebb and flow of your emotions.

How do you enjoy expressing yourself? Do you write or do other creative activities?  These activities can be cathartic as well as helpful in exploring what you are experiencing.  Consider joining a group to do these activities.

When you are with your husband, stay in the present moment. What parts of your husband's personality (and your relationship with him) can you can enjoy?  Focus on those aspects.

Think about what nourishes you outside your relationship. What has always given you energy and joy? Find ways to keep involved with those kinds of activities.  Grief and sadness are heavy. You need energy and hope to be able to give to your husband, as well as to remain healthy. Creativity, being with other people, and exercise lighten you and give you energy.

I will now share just a little about my situation, in case it helps. My husband is 20 years older (88), some dementia, and diabetic with other chronic issues. His mental decline started 9 years ago. Over that time, I have gradually become a nurse and mother. I have lost my lover, intellectual equal, and outdoor companion.  I took early retirement, in part because it was too difficult to look after him and work.

What has helped me? 
- Taking a memoir-writing class, as well as joining some creative-writing groups in which I spent time working through my experiences/feelings. 
- Getting training on Alzheimer's caregiving. Learning about the disease and sharing experiences with others.  I also went to a support group for awhile.
- In the last year, helping myself by hiring others to look after my husband for a few hours a week.  This has been essential to my well being.
- Keeping up my exercise routine. Joining a hiking Meetup group (only possible after I started hiring help).
- Focusing even more on my studio and art-related activity (I'm a mixed-media artist). Building a community of artist friends.
- My husband still has his sense of humor and enjoys nature. We live on a pond and have a group of stuffed animals. I encourage our fun conversations about the animals (real and stuffed).  I feel our love strongly when we do this.

One of the hardest things to deal with has been not knowing how long my husband's decline will last. After struggling mightily with it over years, I finally found that staying in the present moment was the only way I could live happily.

My heart goes out to you. I hope my thoughts have been helpful.

Death comes when it comes. I've been dealing with mom's Alzheimer's for 10 years and the last 5 were severe to the point I had to quit working full time. Now mom is dying. It won't come as a surprise, but nonetheless it will be difficult when it does happen.

My life has been intertwined with mom all of my life, I never left home and the last 23 years after daddy died she really depended on me so I have no earthly idea how I'm going to cope. but your only choices are go on the roof and crack up, or deal with it and go on with the responsibilities and business of living.

You live long enough your loved ones will die off like flies. There is comfort in remembering one day I too will be dead. Each day we are closer to the grave.

I've been dealt with Anticipatory Grief for 4 years now. My husband was on 57 when diagnosed. Ive gone to support groups and I also have EAP through my job ( (benefit)that allows me to go to talk to a counselor 1 hour 2 times per month. It is so helpful for me to just talk non stop for 1 hour and all she do is listen and cheer me on. It on $25.00 co-pay, therefore well worth it. You can not just sit and watch him go down. I learned from my suppot group that it's not mentally health for you. You have to get BREAKS to gain your strength to help him more. I also pop in an exercise tape ( walking) 15 min. every morning at 6:30. I'm drinking more water and watching what I eat. I also go on these ONE day trips with the City Recreation Department that are only $25.00 or $30.00. You have to focus on YOU so you will be around to help him. I have had so many people even RN nurses to tell me that a caregiver can get sick and die before a love one. I'm determined not to let Alzheimer's kill me.

I get to court her, all day, every day.
My wife, my buddy, suddenly became low functioning at age 53 in 2006.
She was assessed at below institutional level.
We were so close that no one was aware.
She became very quiet and confused.
My job allowed her to travel with me, until she could no longer be left alone.
I had to retire early at age 62.
She lost all recognition of people including me.
She lost all learned motor skills, language and reasoning.
This world means nothing to her. She does not interpret objects, people.
She only recognizes obstacles that impede her. She will bump into walls.
She is enraged if we restrain or constrain her. She shuffles most of the day.
Christy is physically capable, but she can't grasp objects.
She can't drink from a cup or sip from a straw.
We hand feed her and hydrate her with a turkey baster continuously.
Often that is while she is shuffling around the room.
She becomes mean and aggressive if in need, violent if in pain.
Since she does not understand, she can't communicate need.
She only knows that she has an itch, a hurt, is hungry, thirsty, now.
It has taken years, but I have learned to recognize signs.
She can only growl whimper, scream, and lash out.
Constipation and UTI have been the worst enemies.
I have learned how to prevent digestive concerns with diet and attention.
We monitor her chemistry with urine reagent test strips.
A day without a BM, unusual quiet and lethargy indicate digestive distress.
A smear on her washcloth means something is at the door and will require stimulation or enema.
UTI's do not happen as she is hydrated, cleaned, wears no covering.
She is prone to seizures and only cannabis will stop them..
We deliver smoke through her Cpap.
We discovered that cannabis also calms the dementia chaos. We deliver that in edible full extract concentrated oil. FECO or RSO.
We find that indica smoke relaxes her for seizure control and sleep.
Sativa edibles make her calm and alert all day.
Our family has never been partakers in alcohol or drugs, so cannabis was foreign to us.
We have been administering to Christy for 2 years and we are grateful for the plant.
It is not how I expected to spend our later years, but she is with me she is happy in there.

Dear Julia, I have been trying to think of ways that might help. This is the best I can do.

One idea comes from the end of a different relationship. Set aside a particular time of day for grieving, perhaps for an hour. When the thoughts crop up during the day, tell yourself that you are postponing them for your grieving time. Put the things that hurt (the happy photos, the two roses) in the grieving corner. When the grieving time comes around, immerse yourself in it, and then stop. Plan beforehand what you will do at the end that requires different thoughts – perhaps grade your students. I’m sure you will see the point – it’s more realistic than trying never to think about things, but can stop it from consuming you all the time.

Another way is to think about other women who have had comparable problems, in particular women whose husbands have gone missing in war. Some women did not know for months if their husband was dead and they should grieve, or if they should hang on to hope. Another sort of living death. See yourself as one of a long term line of women who have suffered like this, and send your thoughts or prayers to them as a whole. You are not alone. You may not find another person who is going through the same thing as you right now, but you have company through time.

Love and best wishes, Margaret

Ah yes, anticipatory grief, now I remember what it is called!  I grieved 'piecemeal.'  I dealt with it very poorly at first, when my DH (1st one, who died of cancer and chemo effects) was in hospital a lot.  I taught, and I made use of substitutes.  I graded papers in the hospital. I got depressed and went to counseling.  I stopped using makeup, because on days I worked, many of them, I would get ready early, and then sit quietly alone to feel.  Cried every time.  One time, leaving him in hospital after another infection went septic, I 'came to' and realized I was lost in the city. Figured I must have a brain tumor!  I kept driving and came to an intersection I recognized and continued on my way. Stress can do that.

I also prayed and cried in the hospital chapel.  Then I asked for time off.  I was depressed and sick, and asked to use sick time. All the stress, right through his death, left me with conditions I'd never had before.  Thyroid not working well, more depression, instant menopause, anxiety attacks, maybe more but I can't remember! Oh yeah, bad memory.

I like faeriefiles answer.  Take care of self as much as possible, grieve and process.  A caregiver support group may help, tho as a teacher it'd be possible only during vacations.  Hang in there.  If you get time (Ha!) massage, and hot baths, are good.

In my case my husband (pops) brain injury happened all of a sudden due to a work accident so I lost him all at once in just a few hours time. It took me years to realize he was never coming back, and more years to come to terms with my loss. Letting go of the him I knew and loved and coming to accept the very different man he is now, was a gift I gave to both of us. You're right, it's a grieving process. You lost and are losing your best friend, lover and helpmate. At the same time you're expected to lovingly care for a very different man. Like every grieving process everyone's way of getting through the losses are unique to the person. My one suggestion is that you allow yourself to grieve in your own way and do whatever it takes to cling to what brings you joy. Don't let others throw guilt at you. Yes, your husband is suffering and yes you should care about his suffering. You are also suffering and you should remember to care for you too.

What works for me is to stay in the immediate moment as much as I possibly can.

My 90 year old aunt is the last of my five “mothers”. My birth mother was the eldest and this dear woman was her youngest sister.

My mother was a severe agoraphobic, often wracked by anxiety attacks and depression, and proudly in denial that anything was wrong.

The other four would seamlessly fill in when my mom would falter in taking care of me or going places with me or doing the the things that, as I ultimately learned, other mothers typically do.

In retrospect I realized that as I reached adulthood Mom began to get somewhat better, and when I married, the aunts assumed roles as friends and allies, still very important in my life.

So now, as one of my aunt’s two POAs, I visit her, bring what she needs to her LA, meet her at the hospital when she falls, and do all I can to do what she did for my mom when she was lost to dementia for the last 5 years of her life.

I don’t dare think of my life with her as a child, or the profundity of what her loss will be when it occurs. Therefore, all I have is the poignant bittersweet moments of NOW. I CHERISH THEM. However depressed I am that she is now somewhat lost to me, I love the jokes with no punchlines, the vacant stares when I’ve said something she can’t relate to at all, her attempts to pay for the suppers at the “hotel” (AL) where she is now.

Are there enough things in your life together right now that you can share in the very moment that they’re happening? Is he able to enjoy silly things your students say, politics, the beauty of the roses? Can you share shorter parts of TV shows, or sporting events, or something good to eat, or a sunset?

I realize that the relationship with a spouse is far different than what I’m doing, but with the sense that by being with him for moments unencumbered by past or future, might you be able to create some moments for him and for yourself that could help you place limits on the grief that you live within, and by doing so, accept it in a more resigned way?

Sympathy to you. I have embarked on a very involving project that takes me away from the sorrow at times. Might there be something that you could be doing that could elevate your spirits, also for moments of time, to remind yourself that good things are still there?