Is this grief? Will I still grieve when he passes?

Yes... what you're experiencing now is called anticipatory grief. And yes, you will still grieve after he dies, as it's a different type of grieving when it's the finality of death that we face.
Be thankful for the good memories you had together, and just enjoy best you can whatever time you may have left with him.
May God bless you and keep you as you travel this very difficult road with your husband.

The situation with my mother was entirely different but I’ve often told people I lost her twice. The first time was when a devastating stroke robbed her of every ability and the second was when she actually died. There was definitely much grief both times. Of course you’re grieving what might have been, of course you must feel robbed, and of course you miss the husband you had, he’s been replaced by someone you can only recognize a bit. I’m sorry for your pain in this. I admire your wisdom in seeking the best care for him and continuing to be involved as his advocate while in care. I’m glad you have good friends and family, so many are isolated. Not sure the hole in your heart will be mended, but it will get better. Time really does help. I wish you peace and healing

I've been grieving for 10 years. My husband, who is still living, was 53 when he suffered a devastating stroke which turned him overnight into a helpless toddler.
He hasn't walked since that day, doesn't talk, only grunts one word commands when he wants something, can't safely eat solid foods, so I make a special diet for him and literally spoon feed him pudding or applesauce. He is in diapers and doesn't like being cleaned, so it's a fight every time. He can't sit up in bed on his own, can't get out of bed or chair on his own, and is very limited maneuvering his own wheelchair around. I have cried so many times, been angry with the universe, angry with him, tried to "negotiate" with God, all with the same outcome; our days remain the same.
Over the last 10 years, I have come to accept that this is just our new normal. This is our life's journey, and we don't always know what twists and turns we will encounter.
I am certain that I will grieve and miss him even more when he is gone. I will miss being a full time caregiver. And it will be a relief as well. I expect to have very complicated feelings. But for now, I just take each day as it comes and try and make the most of it.

My friend called herself a "Married Widow" and that phrase fits quite well.

Yes you are grieving. And doing so on many levels.
You are grieving the loss of a spouse, a partner and I presume the love of your life.
You are also grieving for him..his losses are the same as yours but he can't feel that grief and you know it would pain him to know how hurt you are. (I hope that makes sense)
You are grieving all the lost opportunities those "coulda been" times you would have had.

You took care of him the best that you could.
You did everything that you could to care for him safely at home.
I have always said that the decision to place someone is not an easy one, it is a heart wrenching one., Once that decision is made it is done with the best intentions and with the goal of keeping someone safe.

Yes you will grieve when he dies. And you will in some ways for the rest of your life. There will be a hole in your heart that will always be there. It may scar over but it will be there. (and it may open occasionally when you least expect it)

I had my Husband home on Hospice. I thought I was prepared, I thought I was ready...
The morning he died it felt like someone had ripped my heart from my chest.
I still occasionally cry, just now writing this brings tears to my eyes and it will be 9 years next month. There is no timeline for grief. Ignore those that try to rush you.

here are 2 notes I have above my computer.

Grief never ends
But it changes
It's a passage, not a place to stay
Grief is not a sign of weakness nor a lack of faith
It is the price of love.

Crying is a way your eyes speak when your mouth can't explain how broken your heart is.

((hug))

I have to say that I understand your situation completely. My husband has been in MC for 18mths now and has progressed due to Alzheimer’s and vascular dementia. I miss what we used to have and our life together and grieve every day when I see the man he now has become. I have asked for hospice to come in and begin an assessment for him. After
reading about grief there are different stages, I am sorry that you are going through this, it is at times a lonely journey. My thoughts are with you and please know your feelings are normal.

See a therapist specializing in grief.
Everyone experiences it differently.
It is especially cruel and difficult when you lose the person you know, before dementia and brain and personality changes, who is still here physically. There is not 'clear cut' grieving date or clear transition. It is a loss day by day and must be the hardest experience of grieving to go through.

Grieving is very personal so there is no standard or right / wrong way or specific way of grieving. A person grieves as they need to grieve and how they need to grieve. I believe the process of grieving depends on a few variables such as:
- The quality and longevity of the relationship
- How a person grieving feels about themselves
- How willing or desirous a person is to feel through the grief vs 'keeping busy / diversion / denial.
- Religious beliefs / support i.e., Buddhist would teach to be present with however you feel and not judge it.

I would encourage you to be present with how you feel and honor all your feelings whatever they are (even all the ones that are confusing and don't make sense ... which, in my experience with grief, is many of them). Grief is like mercury - you can't get a hold of it and make sense of it. It makes and does what it does without the person experiencing it understanding it (allow the flow of confusion, changing, not being able to 'get a handle on it."

Allow yourself to miss the person you knew and loved, and feel compassion for the person your husband is now. Here's a hug for you.

Be kind to yourself and enjoy moments with friends.
Find supportive friends who give you the space to talk and/or just be with you vs giving you advice and talking (unless you ask). If you need to cry with a friend, do that. Ask for what you need as so many people are uncomfortable with death, the process of death, the process of losing a loved one as you are - they mean well and do not know what to do or how to respond to you. You need to let them know what you need. Do what brings you joy (a walk in the park, buying / arranging flowers / go to a museum or knitting or carpentry (!) class.

Gena / Touch Matters

I totally relate as my Hub has been in MC 2 yrs and is on hospice now also. He had a TBI that has progressed to end stage Alzheimer’s all from an accident at 65 when we were actively planning our travel we had planned since he had retired a few years before. I am now a retired nurse who was thrust into being FT caregiver. Thanks to a case of Covid his symptoms rapidly advanced and I knew keeping him safe at home was no longer happening with wandering sleepwalking sundowning and a pool in backyard. As caregiver we put ourselves on back burner as our LO care becomes all consuming. That’s grieving too as our lives never will be the same. I did a lot of crying esp out of frustration and though some fam members meant well they couldn’t deal either… in fact one who covered for me so I could see my dr let him wander off and then panicked until they found him at a neighbors. I know they meant well but that trust was now questionable. We took a cruise to try to make memories in the time we have left but that’s when Covid struck and I was stuck with him on the boat while supportative fam members enjoyed the rest of the sights. What we had looked forward too was now out of reach and more grief set in. It was his dr that said I now had no choice because it was affecting me
And my kids and it’s not what he would want. It was a God thing that all placement fell in my lap and two days later I dropped him off giving facility 2 weeks to help him adjust. Did I feel guilty.. alittle but what I was finally able to do was breathe and the kids were relieved because losing Dad was bad enough but they worried about me. I read the book Finding Grace in The Face of Dementia which helped a lot and gave it to all fam members to read and am now reading Emma Willis book also a good read. The issue of friends and fam meaning well is just that… they don’t know what to do and can’t express their feelings. When they say is he better … No he isn’t and won’t be… he is dying from this as that is how this journey ends and then they retreat. Unless they are in our shoes they will never fully get it. I am thankful the facility has counseling for families as a group which I do and I get individual too. We ladies have forged friendships and meet for lunch. We call on each other and our new friendships I know will continue. When I see newbie fam members I reach out fix them a cup of coffee sit down with them and we talk about their loved ones. I need a purpose and not a job so I plan after on volunteering at MC. This cruel disease exist with no end in sight but this trip has made me see the need for us to support each other . Am I bitter about driver who caused accident heck yes am I forgiving no and don’t know if I ever will but I know I feel that God is using me in a powerful way to make a difference … online there are several sites Be Light Counseling, The Living Room, NIDE has podcasts that are helpful and in fact I did one for them which we called Finding Light in The Darkness of Dementia. Emma Willis said Teepa Snow is wonderful too. Maria Shriver has Sunday Mornings…. The point is we will grieve many times over but know you are never fully alone … reach out and take care of you . I have taken several mini breaks and traveled for a few days … yes it was weird but I felt alive again despite the sadness of him not physically being with me but he will always be a part of me and I will live life for the both of us. ❤️🙏🏻

Yes. The problem in dealing with dementia of a loved one is that we grieve when it starts, and continue to grieve as they lose their cognition, memory, strength, balance, and their "selves". And when they pass, we get a swell of emotions of the loss, although we have been losing them bit by bit over several years of dementia progression. I am sorry for your loss, and that it will continue.

But as you have mentioned, there is life after dementia. You will recover given the friends and family around you and the fact that you have kept your social life together.

I believe it is grief. I have been dealing with something similar as my husband’s Parkinson’s has progressed so much the past few months. I was feeling really angry and then guilty and finally saw a therapist who helped me understand that my anger was coming from the stage of grief I was in. For me the grief right now is for the loss of the relationship we once had and for the loss of the person who my husband once was. It’s a journey ❤️

You are grieving your husband and it is very understandable. Please do not have any regrets or feel guilty for anything. You will always grieve your husband, but please don't let it cause you health issues. You must take care of yourself too. Find anything out there that can keep you busy and bring joy. Also, don't be afraid to try a mild antidepressant if you become too consumed with sadness.