Feeling So Sad 11
Please don’t laugh 🤣 I sat on my phone and cut off my sadness post. Maybe that was a good thing it was enough to break my melancholy. I feel better but it happens quite a bit. My DH often asks who am I? Where do I sleep? Do I have a brother? etc mostly I just happily move on but it got to me today and I felt so very sad. How do we cope with this awful disease?
Comments
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may I ask from when you first diagnosed how long till the not knowing you start ??
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This disease is awful. Most of the time I am focused on the day to day but every once in a while it hits me and it’s usually at nighttime when my DH is already in bed. Not knowing who we are in the worst part. This last week has been very challenging for me.
Charlie0419, I knew my husband had issues for 6 years before the day came when he didn’t know who I was. That was the point where I actually had him officially diagnosed. I believe he was stage 5 at that point. That’s been 4 years ago now and he is now late stage 6, early 7.4 -
Dear Biggles, we cope one day at a time, and sometimes one minute at a time. so sorry it’s so hard and so sad. I do understand the sadness. It never completely leaves me even when I’m laughing. Sending you a great big hug and lots of love.
Brenda
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my DH progression was quite slow for many years. This past year though, it has picked up speed.
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Hi Charley0419 my DH has had VD and APHASIA for around 6 years he is probably stage 5. It was about 12 months ago when he first asked who I was and it comes and goes, he also knows our children sometimes, forgets the grandchildren and gets them mixed up, knows most of our old friends most of the time but doesn’t remember new acquaintances. Mostly I can cope and understand this, like all of us when I’m tired it particularly hurts. Thankyou for asking.
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My DH doesn't really know who I am nor does he know our children. He is now at stage 7. I have been on this journey for about 10+ years. I do know that the sadness never completely goes away. I do have moments of joy. I try to laugh and appreciate family and friends. I cry often. I try not to dwell too long in self pity. I try to live as they say one day at time. I try to stay in the moment and not in the past or future. It is difficult at times. I pray every day for God's help. I know this chapter of my life will be closing and I pray I can cope with the grief that follows and hope that I can live the next chapter with zeal.
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hugs to you Biggles.
Today for the first time, my DW has been utterly confused all day. Can’t comprehend what I’m saying, but she still knows who I am, for now. Hit me hard to see this next step, just like every new stage has hit me hard.Her timeline? I first noticed obvious cognitive issues 6 years ago, but can track back a few years to more subtle signs. She was finally diagnosed with dementia in March of last year. She is still firmly in stage 5, though I can see stage 6 threatening.
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The sadness is kind of like my DH Alzheimers. It's different every day, I never know what to expect and it takes unexpected twists and turns. Occasionally I'll have a moment where I don't feel the sadness/grief and I notice its brief absence. Other times, I'll be maybe at Costco and see/hear an older couple having a debate about what to buy for dinner or making plans for a gardening project and I'll wonder - Do they know how lucky they are to have each other? The immense sadness of not growing older together (my DH is only 69 and in Stage 6) takes my breath away at times like these, and who would have expected that at Costco. I have learned that the moment that feels like its too much - that moment doesn't last forever and might be followed later by a moment of joy - like a grand child saying something silly and actually making me laugh out loud. So - just one step at a time, carry tissues just in case and know we all understand.
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yesterday she was filling out something on line and asked me how to spell her maiden name and then married, set me back alittle on that one, so I just spelled it without question
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My wife was diagnosed 3.5 years ago. She had a brain injury 30 plus years ago. There were signs of problems before she was diagnosed, but we thought it was due to her head injury. All that being said, I think the worst part of this journey is that it is a long journey that we have to watch everyday. It is a hard thing to do for both of us. When I think I am handling everything, something else happens and the goal post gets moved. Going to the local Alzheimer's support group helps me.
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Well said. Thanks
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If you're like me, you just go through the daily routine without focusing on your LO's specific deficits. The losses can sneak up on you. I was amazed at how poorly my LO did during his recent hospice assessmnent. He couldn't tell the nurse my name or who I was. He's never expressed confusion about who I am so I was shocked
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I think it's been years since my dh could say my name or our relationship, but he always knows who I am—that I am the person he loves and trusts and cares for, and who cares for him. The words are not that important to me.
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As I was leaving the hair salon, I talked with a gentleman that was leaving too, and we talked in the parking lot. He has cancer and is in the middle of his chemo treatments. He was telling me that he envisions a box and that box is the here and now. He said, “I am learning to enjoy today, right now in the moment. If I start worrying about what will happen to my wife and kids if my cancer becomes incurable, I stop myself and say … you are way outside of the box … get back in the box. Sometimes the box is for the whole day, sometimes the box is for an hour or a few minutes during my chemo, but I work at staying in the box - living right now or today and not looking or worrying about things too far in the future.” I shared my situation with him and told him I am going to try to stay in my own box. We promised to pray for each other and went on our way. Sometimes God sends us a messenger when we really need to readjust and stop worrying about so many things.
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Thank you for posting this, jsps. This is excellent advice. I feel like I’m in an almost constant state of worrying, and most of it is about “what ifs” that will probably never happen. Yes, my DH has a terminal illness, but we’re managing for now, even in stage 6/7. And there are still some good times left for us, even if they are often just moments. We’re all terminal. None of us are getting out of here alive. I will try to remember to “stay in our box”.
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my wife has the patience of an angle , she has about 8 necklaces all bunched up and has been trying to seperste today for over 4 hours straight. Not very successful but still trying.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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