Ambiguous loss
I haven't been here in a long time, hi to all of you who remember me.
Quick background - DH showed signs of dementia somewhere around 18 years ago, before age 45. He's now 62. 4 years ago he moved into memory care, but by that time he was barely walking, didn't know anyone, couldn't eat with utensils, and was peeing everywhere.
Fast forward to today. He's been unable to move on his own for a couple of years. He's in a different section of his facility with full time nursing care. I see no response from him for about anything. He doesn't track with his eyes. He eats pureed food, but still eats when fed and drinks from a straw. On occasion a word will pop out, but it's hard to know if it is really a word or I'm just imagining his sounds. He has NO other health issues except the dementia related issues. There's no telling how long he will continue like this. He's been on hospice 3.5 years. He keeps qualifying with every so slight declines.
When people say early onset is fast, I just want to yell, "LIAR."
I still work full time as a special education teacher. I have to. I'm 58. I was barely 40 when this hell started, and at that time I was a stay-at-home mom. I knew we were losing our main income earner. I worked through the worst of his stages, and hired caregivers. Until it became way too much, and I placed him.
I spent the first 3 years visiting every other day at least. His facility is 45 minutes from my house. It was a commitment, but I felt compelled. Then I took in 3 foster children from my school. Ages 5-12. They needed a home, I provided it. I learned about our foster care system and gave love to them for 10 months. They have now moved and are living with family.
During that time I still visited my husband, but a little less. 2-3 times a week. Shorter visits. Since the kids have moved, I am still visiting 2-3 times a week.
Now that I'm alone again, I have no idea what the hell I am gong to do with my life. Or even want to do. I'm not a widow. I'm still married. But I'm alone. It's a horrible place to be. I know I can make plans for my future, and that's easier to understand than it was 5 years ago. But not easier to do.
This hell can go on forever. It's better now than it was at any time along this path. At least I get sleep. But it is still a path I don't want to be on. I spent the last 2 weeks dealing with hospice and his facility calling daily due to an illness and updating me. That's wonderful to be updated and have so many people caring about him. It was a flu with significant congestion and fluid in his lungs - he's over it now. But it's also stress. This could go on for years yet. Or it could end next week. But I think it will be years.
Comments
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I am so very, very sorry for your loss. We all feel a "loss' because no matter what anyone says, our Person is no longer with us. And it is a Hell on Earth. I can understand how hard it is to make plans. Sometimes I think about it then I feel bad because he's still "here". So I come up with …nothing. I have several hobbies and I try to tell myself that I can feel free to work on those and not worry so much about him every second of every day. I'm wishing you can find some peace every day…even if it's just a little.
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@JoseyWales I'm so sorry to hear it's been such a long path. My dh is about the same age and has been in MC for three years. He's also recently been placed on hospice, and I hope the money lasts as long as he does. I've also felt that ambiguous loss, not only of the person but also of a social identity, being married but alone, single but still married.
I give thanks that my son is still living with me. I wanted him to launch, but I'm kind of glad he didn't quite.
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@JoseyWales We’ve missed you. You and Crushed are the long timers. His wife has passed now.
I know this has been a life altering experience - you aren’t the person you used to be. So I don’t know if you are even interested in quilting any more. If you are, that would give you a few hours of peace- even if all you did was table toppers and table runners.
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Sandwichone123 - Yes, it sounds like you know exactly what I'm talking about. I have a son who sounds like he's about the same age as yours. 25 right now, lived 2 years at college, 1 year (covid) living home and being his dad's caregiver during the day before it got too hard, and then back home once his dad went to memory care. He left again a year ago, shortly after all the foster kids moved it. He's planning to move back. I'm happy for that, even though I want him out on his own too.
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Quilting - It's nice to hear from you.
I actually made a quilt with one of my foster kids. My longarm is acting up, and I need to see what's going on with it, but it managed to work while he quilted his top. It was a simple, lap size top with 4" squares that he put together randomly. But we had fun going through my stash of fabric and finding pieces he wanted. He did all the work, with the exception of the binding. All in one weekend. He was determined!
I find myself stuck in a loop, and getting out of it is just so hard. There are so many other things around my house that need my attention that I feel bad about doing something I actually enjoy. Which is stupid. But it is what it is. Maybe this summer.
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HI Josey. I remember you, and its nice hearing from you again. With you still working and only being 58, you still have a life ahead of you. You need to be the one that pulls your self out of that loop, and when your ready that will happen.
If I remember right you did a lot of quilting, that might be a good place to start. Hopefully it will relax your thoughts so you can start looking forward. It's nice that your son is moving back with you.
My DH, passed away in a MC facility 6 years ago, it was a blessing for both of us when it happened. Your life will continue on, knowing he is in a better place.
Take care of yourself, its good your able to sleep. Hugs Zetta
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My wife was diagnosed 10 years ago and has been in memory care for 2 years and I have been feeling some of the same feelings of being a couple but not really a couple, a couple of 1. All the old social situations have faded away and it makes it hard to feel like you fit in most new social situations. I look forward to when we both are free and I can feel comfortable to just go away for a month. I have no idea where but I think a change would be good.
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Hi Josie,
I remember you well, think of you often, and hope you are able to find some peace and happiness. My DH will be gone 3 years in April; sometimes it seems like just yesterday. He was sick for 13 years and it’s hard at times to remember the good days and what life was like as a couple and a family. Ambiguous loss and stage 8 are interchangeable in many ways. I agree with Lady Zetta- - your youth and the opportunity to socialize through your work are in your favor. One day at a time; you will find your way forward. Please know that many of us “old timers” on this forum are thinking of you and wishing you the best. 🩷
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Hi Josey, Everyone here here is on a difficult journey but I can’t imagine beginning at such a young age. Our journey lasted 11 but fortunately I was in a position to retire so I could care for her. I can’t even imagine starting this journey in our forties. Linda passed a year ago and I still miss her every day. I do not visit this site often these days but I’m glad I saw you post today, I will keep you and your husband in my prayers. Joe C.
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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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