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I don't quite qualify
Posted: Monday, September 13, 2021 9:09 AM
Joined: 1/25/2018
Posts: 756

I'm new to this particular discussion board. Normally I post on "Spouses & Caregivers" or "Musings". 

Let me start off by admitting my life partner and beloved better half  hasn't "passed on". She has been in long term care for a little over a year. With Covid restrictions I've sometimes have had to go  months without seeing her. Even when I can see her there is little of the person I love left to visit. Every hour of every day I struggle with feelings of bevreavement that by the strictest definition I don't qualify for feeling. I've been told meds can help with depression, but do little to relieve this paralyzing grief. Sadly this has proven to be true. If this continues I'm pretty sure I will pass to the other side of the veil before my beloved spouse. I'm having some routine screening done this week and I keep hoping my doc will tell me I have a late stage cancer of some kind. So many of the posts on the "Lost" board sound like what I'm going through every day, but since my DW is still alive-ish I feel like I'm crashing a funeral posting here. Really I'm not criticizing the site. I just wish there was somewhere for those of us who have "lost" someone to AD (or other dementia) but is still this side of heaven. My doctor(who has been wonderful in trying pharmacological interventions) agrees; there is almost no resource out there to help someone who has had to place a loved one into institutional care. She has several patients experiencing this soul crushing grief and struggles to find anything that helps.

Posted: Monday, September 13, 2021 10:56 PM
Joined: 4/1/2014
Posts: 5213

I'm sorry your feelings of grief are so strong. It is understandable and we here and probably on all the forums, can certainly relate. It's not uncommon at all to go through all the stages of grief while our loved one is still alive physically. Their losses are our losses and they resemble tiny deaths that occur every day for years and years. Because of this it is very important to give self care and self love. Glad you are here so we can support you through your grief. It doesn't matter that your wife is still alive, your grief is real and we understand.

 Hope all goes well with your testing. The one thing that kept me going for the years I took care of my mother was knowing she would want me to have a good life after my caregiving days were over. Good luck next week!

Posted: Tuesday, September 14, 2021 6:37 PM
Joined: 12/4/2011
Posts: 21242

Grief...such an important topic.

I don't know how grief after death can be harder than the grief you are feeling now. What you are feeling might even be worse.

The bottom line is that grief is what we feel when we lose something and I think each of us deals with it in our own way.

I have had  two crushing loses in my life and I handled both the same way without thought. I pretty much caved into it, isolating myself not unlike a wounded animal. I told people to leave me alone. They with all their good intentions simply made me angry. How stupid, I thought, that they could possibly know what would help me.

When I did "surface" I became involved in an activity that I used to love in a place where I knew no one. It was a lifesaver.

So here is my 2 cents. Accept your grief. Accept the hole where your wife was. You will never get over the loss but you will reach a point where the grief walks with you at your side and will not be all encompassing. 

Not a day goes by that does not have a "moment" of pain but it is now a moment. I believe you will reach that point will get there your way.

Posted: Sunday, September 19, 2021 11:08 AM
Joined: 7/30/2013
Posts: 6064

I know how you're feeling. You start out grieving the loss of your relationship. Then you grieve for each little bit of your loved one that gets lost along the way. My hubby died in February, 2020, after suffering from AD for 8 1/2 years. My first feeling after his body finally got the memo was a huge sense of relief. And then COVID-19 hit three weeks later. Last month, my daughter got a grim cancer diagnosis. She may only survive another 3 years. So, I'm off to the races again. At least her brain is intact, so I won't lose the relationship until she goes to heaven. The last year and a half + has been horrible for me. I can’t even decide if I'm grieving over the loss of my husband or the loss of the entire world due to COVID-19 restrictions. The only reason that my head is still above water is that the Lord is holding me up. He still has work for me to do here.
Posted: Monday, September 20, 2021 9:10 AM
Joined: 5/25/2020
Posts: 390

Elaine, I can imagine that the weird COVID world we've been living in must have made a very difficult time even harder. I'm so sorry to hear about your daughter's diagnosis - that will be a different experience again.

I'm sorry if I'm being insensitive to your emotions here, but I wanted to say how much I liked your comment "after his body finally got the memo" - that put into words exactly what I had felt, thank you. My husband's EO disease progression was quite fast and, as he was 60 and otherwise fit and healthy, his body just would not give up. From the point where hospice said he had <24hrs, he kept breathing for another seven days. Even though it was clear he wasn't rallying another time, his heart and lungs were as strong as ever.  Your phrase really struck a cord and gives me words that explain what it was like.

Thank you - and very best of luck for you and your daughter.

Posted: Friday, September 24, 2021 6:23 PM
Joined: 4/1/2014
Posts: 5213

Aw Elaine, I'm sorry your daughter is so ill. I know she will fight for every day she can have and you will have more good times to share with her. Take good care of yourself, too.
Space within
Posted: Sunday, September 26, 2021 6:20 PM
Joined: 10/7/2018
Posts: 92


 I can relate to some of what you are expressing. My mom was in MC for two years this past June. She passed on the the 16th. Before she entered MC i look back and realize I started grieving her as she slowly became another person.  I continued to grieve in various ways, guilty that some of the times I spent with her, I was sad..holding back tears...grieving who she use to be ..wishing the present was the past.  Some days were better than others.  On my well rested days I tried to keep in mind all the beautiful lessons she was sonetinuing to teach me- if I could just be present with them- regardless of if they were pleasant ot unpleasant lessons.  

Her physical precense in now gone.  And my friend stated that I am pretty much grieving two people...

I am blessed with a supportive family- dad and sibilings, aunts, friends. We all are grieving differently, as we each held the same connection to her but different. 

Also back when I would visit her in MC, I would speak with my Dad or sibilings about how she was doing.  And sometimes we would be sad or worried if during our visits.. she was quiet or asleep.  I started to open my mind and realized we sometimes would so much pressure within ourselves that every visit be a "good" day for her.  It s like give it a break- We are all human, it is okay if she has a sleepy day or seems quiet...we all have good and bad days.

I know she will be in my heart for the rest of my life.

Posted: Monday, September 27, 2021 5:02 PM
Joined: 4/1/2014
Posts: 5213

Sorry for the recent lost of your dear mother, Space within. She sounds like she was a lovely person.
Posted: Sunday, November 28, 2021 5:43 AM
Joined: 7/10/2017
Posts: 663


I'm sorry you have to go through this. I remember the feelings well.  During the eight years Brenda needed 24/7 care, I grieved every single day.  When she finally had to go into an Alzheimer's Care facility (for her last 70 days), I was there every day, all day.  I only went home to sleep.  The whole experience was soul shattering. The one blessing I can see clearly was that she passed away in January, 2020, just before the covid lockdowns.  I don't know what that would have done to me, so I can only imagine what you are going through.

What finally got me to feel that I might have a life again, after she passed away, was therapy.  It really helped.  There is a national outfit called Blue Moon that deals with grief therapy - they come to your home and are covered by Medicare.  If you feel up to it, it may help.

No one will object to your posting here.  I clearly remember the feeling that Brenda was lost to me long before she finally left this mortal coil.

Stay strong,